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autalk platform

@autalkio

3 months

I'm in tears. A tiny event, but it means so much to our family. 😢❤️ Today, when Alex wanted to go for a walk, he decided to show that he wanted both me and Mom to come along. He approached her, pressed his cheek against her back, and gave her a small hug. To put this in

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@autalkio

3 months

🧵 Our home has become much calmer lately. Yes, we're all on edge due to the war in Ukraine, and our 8-year-old daughter Eva often worries about the nightly air raids. We're far from the front lines, but the night alarms disrupt sleep. But overall, we're calmer, thanks to Alex.

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@autalkio

8 months

Alex has always had gorgeous, thick hair. Cutting it was rare and challenging, as it is for many with autism. But we faced a new hurdle when he started pulling out and eating his hair, known as trichophagia. He managed to create a spot the size of a large coin. 🌀

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@autalkio

8 months

Yet, her parents navigated it all, giving her the utmost care and love. Their resilience is a powerful reminder that strength and love transcend any challenges life throws at us. 💙 #Resilience #AutismCommunity

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@autalkio

8 months

After trying to manage this for a while, we made the tough decision to shave his head, though it broke our hearts to do so. Surprisingly, this helped a lot! Sometimes, the hardest choices lead to the best outcomes. 💇‍♂️ #ParentingDecisions #TrichophagiaAwareness "

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@autalkio

8 months

Exploring options for our son's well-being. Recently, Natalia attended a conference featuring a sports camp in Turkey specializing in assisting autistic individuals with physical training. The idea is that improving the physical aspect positively impacts their mental well-being.

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@autalkio

2 months

Our daily routine – a trip to the supermarket. And it's a whole different story now. Getting a smile out of Alex used to be impossible. 😊 #Progress #AutismAwareness "

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@autalkio

4 months

🧵 Big day again! Our swimming coach said, "This isn't just progress, it's a breakthrough!" 🏊‍♂️💪 Alex was diving and retrieving rings like a dolphin. 🐬 He also almost laid on his back and kicked his legs, which was very difficult for him before. Overall, I feel like we’re on

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@autalkio

8 months

During my darkest moments, when I contemplate life's twists of fate and how the genetic lottery played out for Alex, I think of Veronica from our center. She had autism, severe cerebral palsy, epileptic seizures, and a fragile heart.

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@autalkio

5 months

Day 12. 🧵 Daily update on intranasal vasopressin therapy for Alex, our autistic teenager. Yesterday was a joyful surprise! 🎉 Alex amused us greatly by making new sounds throughout the day—somewhere between grunting and throaty noises. It might seem small, but for someone

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@autalkio

4 months

Continuing vasopressin nasal treatments for our autistic teenager. Short update for the past few days as work has kept me busy. May 5: Very active today. Ran around the supermarket laughing. He also learned a new gesture—licking his palm—which he finds hilarious. Amazingly, he

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autalk platform

@autalkio

4 months

Personal: After observing Alex's response to the vasopressin treatment over the past month, I can confidently say—it works! While it's not a magic cure-all, it significantly eases the challenges families face with non-verbal autistic teenagers who struggle with aggression.

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@autalkio

4 months

We've been giving Alex vasopressin for two months and started keto 10 days ago. Over this period, he's lost almost 10 kg, with the weight loss accelerating since starting keto. I'm a bit concerned, but overall, I'm pleased with the results. #AutismJourney #KetoDiet #Progress

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@autalkio

5 months

🧵 Days 15-16: A couple of challenging days. Alex is full of energy, racing around the house like a rocket. His mood is joyful, with no signs of aggression. 🗣️ He’s making a lot of sounds, still resembling echolalia, but he’s definitely trying to mimic parts of words.

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@autalkio

4 months

🧵 Update: Alex has been on intranasal vasopressin for over a month, and we recently started a keto diet with butyrate oil 5 days ago. #AutismJourney #KetoDiet 📅 Today was a big and challenging day—surgical visit and examination. Alex handled it like a champ. 😷 No meltdowns

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@autalkio

5 months

🧵 Day 14: A significant milestone in Alex's journey with intranasal vasopressin therapy. #AutismTreatment For about 1.5 years, Alex was on Olanzapine and Aripiprazole, which caused substantial side effects: weight gain and a generally subdued state.

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autalk platform

@autalkio

5 months

who's nearly always silent, it felt almost like a conversation. 😄 Every new sound gives us hope and reminds us why we explore these new treatments. Here's to more "chats" with Alex! 🗣️💬 The mood was great. #AutismAwareness #InnovativeTherapies

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autalk platform

@autalkio

8 months

Under anesthesia, we managed multiple tasks - dental cleaning, blood tests, and even a visit from a surgeon for his ingrown toenails. It was costly, but we achieved so much in one go, bringing us immense relief. #MedicalVictories #AutismSupport

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autalk platform

@autalkio

9 months

Beyond unusual eating habits, our journey with Alex, an autistic child, has been a spectrum of love for the elements, particularly water. Throughout his childhood, Alex's fascination with water was unmistakable. #ParentingJourney #AutismAwareness

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@autalkio

4 months

Maintaining the keto diet is proving to be quite a challenge. Alex is zooming around the house like a rocket and craving carbs! 🚀🍞 And... he’s constantly making various sounds. It feels like he really wants to talk but just can’t quite yet. 😊🗣️ #AutismJourney #KetoDiet

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autalk platform

@autalkio

5 months

He smiled quite often and didn't seem as lost. I'm very encouraged. Achievements for a neurotypical child might be microscopic, but for us, it's a leap. Especially in the mood. We've made titanic efforts just to get him to smile occasionally. #autism #vasopressin #dailyupdate

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autalk platform

@autalkio

5 months

He can only say "Give" and "Yes" (sounds Ukrainian very similar) and a couple of syllables like pa & ma. Overall, social interaction is still very minimal. But against the backdrop of significantly reduced aggression and anxiety, I'm filled with optimism. #autism #vasopressin

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autalk platform

@autalkio

8 months

The struggle to bridge the communication gap with a non-verbal child often involves decoding subtle cues. In our case, literacy adds another layer. How have you navigated through challenges in understanding your child's relationship with reading #CommunicationBridge

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autalk platform

@autalkio

6 months

Does your special child have a thing for collecting specific items? In our family, we have a love-hate relationship with animal figurine producers like Schleich, Safari, etc. Each figurine costs between $5 to $20, and Alex demands them frequently over the past 10 years.

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autalk platform

@autalkio

4 months

Thank you for your support and encouragement. It means the world to us as we continue this journey. Here’s to more positive changes and ongoing resilience! 🙌 #Autism #Treatment

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@autalkio

8 months

Curious to know what everyone's looking forward to in the New Year! 🎉 As a parent, I'm closely following all the latest research on autism genetics and the quest for therapeutic targets for potential treatments.

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autalk platform

@autalkio

8 months

Would love to hear from other parents of autistic kids about your medical adventures. Any tips or hard-earned wisdom? Your shared experiences could really help families like ours. Let's build a network of support, one story at a time. #AutismFamily #WeAreInThisTogether

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@autalkio

5 months

Day 8-10: Home Experiment with Intranasal Administration of Vasopressin to an Autistic Teen. Three more days of observation. Overall, there's been a positive physical change - he runs better in the store, faster and longer. He's almost given up evening "snacks and nibbles."

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autalk platform

@autalkio

8 months

Our journey with our 14-year-old nonverbal autistic son, who weighs 100kg, is filled with unique medical challenges. Figuring out his pain points? Always a complex puzzle. #AutismAwareness #MedicalChallenges

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autalk platform

@autalkio

6 months

We still had a flip chart from the office, so we left Alex a little message. I wrote, "Mom and Dad are leaving for x days," with "x days" represented by four colored magnets, each with our family photo at the end.

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autalk platform

@autalkio

9 months

Being a dad to a 14-year-old nonverbal son with autism is a journey of unique challenges and immense joy. Each day brings its own lessons. As a software developer, I'm channeling this experience into creating a platform for families with autistic children. #Autism #TechForGood

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@autalkio

4 months

🧠 Groundbreaking study on the keto diet and butyrate oil: This is exactly what our geneticist recommended. Seems like they had some early data. 🌱 The most inspiring part for me is the change in gut flora over time on this diet. Almost all modern

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autalk platform

@autalkio

5 months

By the way, about the hormone itself. In Ukraine, I couldn't buy vasopressin specifically, so I had to buy a generic version. Well, lucky for me, it's sold without a prescription. #autism #parentingjourney #vasopressin

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autalk platform

@autalkio

5 months

But something strange happened this time.. he tore the t-shirt and continued to smile and behave like an excited child. I'm not ready to comment yet.. but the storm passed by. #autism #dailyupdate #vasopressin

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@autalkio

7 months

1/ In recent years, scientists have increasingly linked autism and other mental disorders to the gut microbiome. 🧠👥 I've been reading about various fecal transplants and interventions, although success stories seem elusive. Do any readers have experiences to share?

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autalk platform

@autalkio

3 months

Recent research suggests that the gut-brain connection is even stronger than previously anticipated. Although there are still no definitive treatments for autism, schizophrenia, and Alzheimer's disease, the promising direction of current studies gives hope. As such, I continue to

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autalk platform

@autalkio

5 months

@sairads As I can see - low blood sodium level low blood pressure, dizziness, spinning sensation stomach pain, gas, nausea, vomiting; or pale skin, numbness in your fingers or toes. I currently use two sprays of the spray twice a day. And I closely monitor the child’s condition.

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autalk platform

@autalkio

5 months

Day 11: Home Experiment with Intranasal Administration of Vasopressin to an Autistic Teen. In terms of the social sphere, it's all very complicated. Overall, I see microchanges.

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autalk platform

@autalkio

5 months

Day 5: A notable improvement today—Alex is much more comfortable with touch. He doesn't growl when hugged and sometimes even smiles as if he finds it pleasant. He's also getting along better with the dog, not trying to hit and happily touching.

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@autalkio

9 months

He often had to endure rough treatment from Alex, and it seemed to me that Alex didn't feel any emotions towards the dog. #PetsAndAutism #EmotionalSupportAnimal #ParentingWithAutism #SpecialNeedsPets #TherapyDogs #AutismAndAnimals

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autalk platform

@autalkio

9 months

"Do you have a pet in your family? A cat? A dog? How does your child react to it? Does the pet have a calming effect on your child? Or, conversely, does it sometimes provoke aggression? Or is there no reaction at all?

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autalk platform

@autalkio

9 months

Parents of autistic children, what unusual things does your child eat? Our journey with Alex includes almost the entire spectrum of inedible items. #AutismAwareness #ParentingChallenges

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autalk platform

@autalkio

9 months

However, times have changed. Recently, Alex had a meltdown in a supermarket, screaming and tearing his clothes. But this time, no judgment, only offers of help and water from strangers and staff. How do your kids react, and how do people around you respond now? #AutismSupport

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autalk platform

@autalkio

8 months

Our son's interaction with written language remains enigmatic. Despite daily observation for 14 years, we're uncertain if he can read. He recognizes some words, and matches pictures with text, but comprehending full sentences eludes us.

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autalk platform

@autalkio

8 months

@LandmannTr71547 Thank you so much Tracey for your kind words and support. It's indeed a challenging journey, but it's also filled with moments of unexpected joy.

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autalk platform

@autalkio

5 months

Day 6: Home Experiment with Intranasal Administration of Vasopressin to an Autistic Teen. Alex seems to be better at understanding speech directed at him. Previously, convincing him to go to the store (a trip he was inclined to make anyway) could take up to thirty minutes,

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autalk platform

@autalkio

9 months

In my dreams, I revisit a moment before we knew. Our 3-year-old is fixated on a video, a nursery rhyme teaching counting. The video emphasizes 'Seven!' and each time, my wife and I exclaim in unison, 'Seven!' Alex is silent, always silent.

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autalk platform

@autalkio

5 months

@BallotStrange Thank you for your kind words and empathy. It's indeed been a challenging journey, but we are hopeful that these new steps will lead to better days for Alex and our family. Your support means a lot to us!

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autalk platform

@autalkio

8 months

In Kharkiv, my wife had set up a center for autistic children, 'Special Childhood,' which Alex attended daily. Swimming and daily activities kept him active. Balancing his love for sweets was a challenge, but we managed his weight well. #AutismSupport #HealthyLiving

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autalk platform

@autalkio

5 months

@UncleChris2046 Congratulations Chris and I’m a little jealous) It’s good that you made up for the delay. We are far from this yet, but we are working hard. Tell me, have you been diagnosed?

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@autalkio

6 months

@becky_sing84602 Thank you Becky! 💓

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@autalkio

4 months

@UncleChris2046 🩷 Chris!

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@autalkio

9 months

And when Alex first saw the sea, it was love at first sight. The vastness, the sounds, the endless horizon - it was a moment of profound connection. #AutismFamily #SeaLove

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@autalkio

8 months

Almost a year later, we're slowly finding our footing. We're exploring local centers and seeking a trainer for Alex, trying to rebuild some structure in our disrupted lives. It's a journey of small steps toward a new normal. #RebuildingLife #HopefulFuture

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autalk platform

@autalkio

5 months

@UncleChris2046 Hi Chris. I will definitely contact you if I need anything. I want to wait until the end of the month and sum up the results. Maybe we really need probiotics)

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autalk platform

@autalkio

5 months

@autismabilities It's quite challenging to discern the emotions of a completely non-verbal child, 😊 but when Alex makes these new sounds, he seems to be quite content. It's those moments that give us a glimpse into his feelings! 🌟

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autalk platform

@autalkio

9 months

We had just learned about our diagnosis when we decided to get a Golden Retriever named Caruso. Alex was 4 years old at the time. I read somewhere that animals of this breed can act as an emotional buffer. Caruso was an amazing companion for 10 years.

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autalk platform

@autalkio

6 months

While we were away, Grandma and Alex would remove one magnet each day, and our son remained calm. Grandma also claims that Alex pointed to the right words - "mom" and "dad." Excitedly intrigued. We'll keep experimenting further. #Parenting #Autism

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@autalkio

8 months

@becky_sing84602 Becky! Great idea. I'll try. Thank you so much for your feedback! 💓

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@autalkio

9 months

Parents of children or teens on the autism spectrum, how often do you face aggression or self-harm behaviors? What triggers these episodes, and how do they manifest? Let's open up a dialogue to understand and support each other better. #AutismAwareness #ParentingChallenges

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autalk platform

@autalkio

8 months

As parents, we continue to explore and adapt, celebrating small victories in our unique journey. Let's build a supportive space to share our insights and challenges. Together, we can navigate the complexities of autism and literacy. #AutismJourney #ParentingTogether

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autalk platform

@autalkio

9 months

But he also eats a lot of sweets - chocolate and candies, and salty, flour-based snacks. How do you encourage trying new foods? How can we add fruits and vegetables to the diet? #AutismParenting #HealthyEating #SpecialNeedsNutrition #ParentingChallenges #FussyEaters

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autalk platform

@autalkio

4 months

@UncleChris2046 Thanks Chris!

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autalk platform

@autalkio

9 months

Parents of autistic children, have you ever faced judgment for your child's behavior in public? Reflecting back 10 years, society's awareness of autism was minimal. We faced disapproving stares at playgrounds and felt judged almost daily. #AutismAwareness #ParentingChallenges

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autalk platform

@autalkio

5 months

Now, I understand that he truly seems to be less anxious and worried. Progress is evident. We will continue to observe. #AutismResearch #VasopressinTrial #Progress

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autalk platform

@autalkio

9 months

Alex has chewed on walls, consuming plaster and, it seems, even concrete. Ice and snow are, of course, on the menu too. Meanwhile, convincing him to eat even a single fruit is nearly impossible. #AutismJourney #FoodChallenges

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autalk platform

@autalkio

9 months

Then, unexpectedly, he speaks clearly, 'Seven.' Our eyes meet in disbelief, afraid to believe he's just said his first word. "Later, we realized that 'Seven' was both his first and his last full word. Since then, he's spoken only in short syllables. #SpeechDevelopment #autism

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@autalkio

9 months

@AutismSociety Very useful. Thanks

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@autalkio

6 months

We finally found a good developmental expert in our new city. Turns out, he used to work in our old city—small world! 😄 It's a bit of a drive, around 40 minutes. Packed up, headed out.

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autalk platform

@autalkio

6 months

As I mentioned earlier, even after 14 years, we're still not entirely sure if Alex can read. And so, as we were getting ready for another business trip, my wife and I decided to conduct another small experiment, as our departures often trigger panic attacks in our son.

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autalk platform

@autalkio

6 months

As relentless parents, we're constantly searching for ways to broaden Alex's interests. Some attempts are more successful than others. 🎬 When 'Shusha' was 5, we tried going to the movies.

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autalk platform

@autalkio

4 months

📉 As for keto as a weight loss diet, it’s been incredible. In just a month and a half, Alex has lost about 8 kg. This weight loss has been beneficial—he’s more active and finds it much easier to move around. #KetoDiet #AutismSupport #HealthUpdate

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autalk platform

@autalkio

5 months

🧵 Day 13: Alex's journey with intranasal vasopressin therapy continues. #AutismTreatment 🔊 Alex is exploring a variety of sounds—though not yet forming words, he's vocal almost every waking moment. 🌙 Sleep challenges have emerged: Melatonin no longer aids his rest.

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autalk platform

@autalkio

5 months

And once again, he was in a good mood. 8 out of 10. It seems there might be a decrease in aggressive behavior. #AutismJourney #Parenting #DailyUpdates #Vasopressin

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autalk platform

@autalkio

9 months

Share your experiences! #AutismAwareness #Parenting #SleepQuality #AutisticChildren #HealthySleep #Melatonin #AutismJourney #OptimumNutrition #SleepStrategies #TechnologyAndSleep #WeightedBlankets #BedtimeRoutine

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autalk platform

@autalkio

7 months

2/ The process is complex and somewhat risky, involving the suppression of the natural gut biome with antibiotics. 🦠💊 Have you encountered success with such interventions? Share your insights! #FecalTransplant #AutismTreatment

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autalk platform

@autalkio

6 months

Decided to finally watch the second part of Dune. 🍿 With just half an hour left in the movie, an air raid alert interrupts. And we find ourselves spending time in the underground parking. What to do next? Buy tickets again or wait for release on iTunes?🤔Hate Putin! #DunePart2

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autalk platform

@autalkio

9 months

"🧠 Exciting breakthrough in autism research! Microglia, the 'glue' supporting neurons, may be a key driver of altered brain connectivity in autism. Studies on mice lacking the SCN2A gene reveal overactive microglia and fewer neuronal connections. #AutismResearch #Microglia

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autalk platform

@autalkio

8 months

🧵 A Thread on Our War Journey: When the war in Ukraine began, we had to make a quick decision. We packed our lives into a car and left, finding a new home away from the city. A safe haven, but at a cost - our social life took a hit. #UkraineWar #FamilyJourney "

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autalk platform

@autalkio

9 months

Our youngest daughter was terrified, but Alex, our autistic son, walked unfazed. He didn't duck or hide; the sounds and chaos didn't seem to reach him. We were lucky to quickly get in our car and drive away from Kharkiv, heading towards the safer west. #FamilyEscape

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autalk platform

@autalkio

6 months

We've accumulated.. not sure... thousands of these figurines. I'll share photos in the upcoming posts. Most of the collection remains in our abandoned apartment in Kharkiv. But we'll be back, I believe. 🦒🐘 #Collectibles #SpecialInterests #FamilyStories

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autalk platform

@autalkio

4 months

🧵 Month 1 Update: A month has flown by with many ups and downs. Writing daily updates proved challenging due to work and at times, a lack of new developments. But, let's dive into the significant changes we've observed. #AutismJourney

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autalk platform

@autalkio

6 months

Then, Alex refused to get out of the car. The expert and we spent a whole hour trying to coax him out and get him to start the session. Didn't give up. Oh well. We'll try again. 🚗 #DevelopmentalExpert #Challenges #NeverGiveUp

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autalk platform

@autalkio

9 months

🧵 A Thread: As a parent of an autistic child, I want to share our harrowing journey during the war. Our story begins in Kharkiv, Ukraine, in early 2022, amidst rising tensions and fears as Russian forces amassed near our borders. #UkraineWar #AutismAwareness "

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@autalkio

4 months

though each visit for tests is a significant challenge. Thank you for following Alex's journey. Here's to more progress and learning in the coming month! #AutismAwareness #FamilySupport

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autalk platform

@autalkio

3 months

@PatriquinCarla Hi Carla. Yes, we started giving Alex intranasal doses of vasopressin (twice a per day) about 2 months ago and have seen very good results. His aggression has significantly decreased and his mood has improved, providing him with great motivation. Additionally, we began

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autalk platform

@autalkio

9 months

Alex falls asleep with an iPad, and he's learned to adjust the screen brightness himself. When I take the tablet to charge, it's always at the lowest brightness. What helps your child sleep? Do you take away gadgets before bedtime? Room ventilation, special weighted blankets?

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autalk platform

@autalkio

9 months

"New day, new tweet! 🌞 Let's talk about sleep quality in autistic children. Alex, until he was 5-6 years old, had a very hard time sleeping. We often woke up to his laughter at night 🙂 He could lie there, staring at the walls and laughing.

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autalk platform

@autalkio

9 months

Parents, how do you deal with food monotony? Our son Alex’s diet is limited to only 4–5 dishes, like porridge with various meats and cutlets, plus compote and water. The compote helps get some fruit vitamins in.

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autalk platform

@autalkio

9 months

Welcome to my account, a space dedicated to parents of minimally verbal or nonverbal children and teens on the autism spectrum. Here, we'll share experiences, insights, and support. Together, we can navigate the unique world of autism. #AutismSupport #ParentingJourney "

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autalk platform

@autalkio

4 months

🌟 The changes we've seen in Alex underscore the potential of this treatment to improve quality of life not just for him, but for our entire family. It's a journey of small steps, but each step forward is a huge leap in our world. #AutismSupport #Hope

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@autalkio

9 months

How do you handle these unique eating habits? Have you found any strategies or foods that work for your child? Let's share our experiences and learn from each other. #AutismSupport #CommunitySharing

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@autalkio

7 months

3/ Interestingly, Alex's gut biome seems markedly different from that of a typical child. I've never heard him experience gas throughout his life, possibly attributed to his very restricted diet. 🍽️ Any thoughts or experiences on this? #AutismJourney #DietAndHealth

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autalk platform

@autalkio

9 months

Our escape was a product of prior planning. We had already discussed routes and exits, which put us ahead of many. Leaving the city, we avoided gas stations and jams, embarking on a 2-day journey into uncertainty, amid horrific news and anxious calls. #RefugeeLife

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autalk platform

@autalkio

8 months

May your children hear you more and express their desires more. Cheers to every step forward, no matter how small. 🌟 #ParentingWins #AutismAwareness #SmallVictories "

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autalk platform

@autalkio

5 months

He goes to bed late, overstimulated, and wakes unusually early. 🚨 Increased daytime activity and a notable shift in sexual behavior have been observed. Additionally, digestive issues and burping have started. We're keeping a close watch. #AutismAwareness #HealthUpdate

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