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SensationalLearningWithPenguin

@sensationallearningwithpenguin

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Malin - mum of nonspeaking autistic 19yo "W"🐧
Life & learning. Epilepsy, LD, AAC, sensory needs, health, happiness 🤞✨
Born in 🇸🇪 Living in 🇬🇧

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JUST LIKE HEAVEN 🥹🌊

Oh my goodness, I’m still so excited from yesterday afternoon, as we FINALLY managed to get back to our old favourite beach walk! W has been shaking his head and not wanting to get out the car there for many months, and I’ve missed it so much! Plus I know the little bit of exercise provided by those walks can be so beneficial for W, as he’s become quite sedentary over the past couple of years - especially compared to what he used to be like! 🙃

There was a time when I’d sigh over the fact that he ALWAYS chose “go for a beach walk” over the other options I’d suggest to him on his AAC… But when he did so yesterday afternoon, my heart got excited. I still thought he’d most likely shake his head once we got there, and no actual walk would happen. When we got there (it’s a short drive from home), he opened the car door and… then slammed it shut again 😑 I got out and went up on the sea wall, to at least get to watch the views for a moment. Hubby waited outside W’s door, in case he’d change his mind. I took a couple of short videos, thinking I could show them to W, to maybe tempt him to come and have a look for himself. As I turned around to head back to the car, W was getting out! 😃🎉

I don’t know if this was a one-off, or if he’ll be happy to go for beach walks again more regularly, from now on? 🤷🏻‍♀️ Either way, I’m so happy this happened, it felt sooo good to be back! 🥹🌊🌅

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#beachwalks #octobersun #autismfamily #nonspeakingautism #justlikeheaven by @sensationallearningwithpenguin

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18 days ago

WHAT DO YOU DO FOR AN ENCORE? 🎶💫

On Sunday night, I did a bit of time travel, courtesy of Jarvis Cocker & band mates, as I went to see the new Pulp music documentary at our local Kino 🎬 And I loved it!

It’s been over 30 years since I first got into Pulp, but I’ve never (yet) seen them live. This film was, I think, the next best thing. The sound was great, and I had a great time singing along and bobbing about in my seat, pretty much feeling at one with the audience on the screen 🙌🎶

The filmmaker Garth Jennings uses Pulp’s 2025 show at the O2 in London as a framework for telling the story of the band, from the earliest beginnings until now. Images and videos from the archives also add to it, and the whole thing is excellently narrated by Jarvis himself 👌

Their stage performance is brilliant! The music, the singing, and the way Jarvis moves his gangly body, in his very personal & intuitive style. Kind of reminiscent of how Ian Curtis would let the music possess him, while on stage with Joy Division. And perhaps also not too dissimilar to my own kitchen dance moves!? 👋🤪🫳

It’s mentioned in the film how songs can enable a kind of “real life time-travel”. And many of Pulp’s songs do exactly that for me, transporting me back to the mid 90’s…💫 But watching Jarvis & co perform on stage now, at a more “mature” age, also makes me feel more comfortable in our present time - and less concerned about turning 50 in just over a month 🙃 I also realised that I can enjoy the music and Jarvis’ singing better now, as his older looks are less distracting to me, lol 🫣🥰

On the way out, I had to commemorate the occasion with a poster selfie, in a suitable/questionable pose 🤪 Because we already try too hard to act like grown ups, right? 🙃🖤 [sound on to hear the song I’m alluding to, and it’s excellent lyrics]

Finally, big thanks to @wildmoodeb for sharing lots of clips of Pulp on stage, in her stories this summer. It’s reignited my love for them, and without that, I might not have gone to see this film - and I’m so glad I did!
The only problem now is that I want MORE. I would really love to see them live on stage. So… will there be another encore?? 🥹🤞✨ by @sensationallearningwithpenguin

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a month ago

SAFETY IS NOT A 'ONE SIZE FITS ALL' ⚠️

Believe parents when they tell you about what is needed to keep their child alive and safe from harm.

I think all of us who are parents of a child who is/was an eloper are having a lot of heavy feelings after what happened to little Noah Woods, who went missing on Tuesday afternoon and was found the following day, deceased, in a pond not far from where he disappeared 💔

A lot has already been said about it, and I don't know the family nor the exact details of what happened or what Noah was like. But as the mum of a nonspeaking autistic boy who used to be a "runner"/eloper (he's now 19 and - touch wood - not as keen on running off or getting into water, as he used to be), my mind keeps going over what happened to little Noah and what could possibly have stopped it from happening. Or what might help prevent this happening to others families. And I think what it comes down to in essence is:

⚠️ Believe parents when they tell you about what is needed to keep their child alive and safe from harm.

When they say they need a vigilant set of eyes on them at all times, believe them.
When they say they'll run into traffic or the sea without any fear or hesitation...
When they say they can disappear in the blink of an eye, and run so fast it's hard to catch them...
When they say it wouldn't be safe to take them somewhere with only one adult present...
Believe them.

When they say they don't feel it's safe to let you mind their child for them, don't take it as a personal insult. Ask more about why, maybe? And believe them.
When they say their child needs a 1:1 at all times, believe them - and don't leave their child alone for even a few seconds.

When W was little, elopement was big worry, always. What if I'd fall and injure myself, as he ran off? What if I'd have a medical emergency while out with him? He wouldn't be safe on his own, even briefly. Not like a typical child, who'd stay by your side, or come when you call, who can ask strangers for help, tell them your name etc. Unless you've lived with this, it's hard to understand the seriousness, and the extra layers of safety needed.
It's not being paranoid. It's life-saving 🖤 by @sensationallearningwithpenguin

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a month ago

ELECTROLYTES ☀️⚡️💦

I’m a little ashamed to say that I knew almost nothing about electrolytes until a couple of years ago, and I can’t say I fully understand them now either, though I’ve heard a fair bit about them in connection with epilepsy, dysautonomia, and other health conditions I’ve had the need to learn more about in recent years. We all need them though, regardless of any health issues! And when the weather is hot - as it is here in the UK right now - a decent electrolyte balance becomes extra important, and especially so if you are prone to get dehydrated or have health issues that tend to get worse in hot weather. And this is the case for my son W 🐧

W is autistic, nonspeaking, with learning disability and epilepsy. Due to interoception issues he won’t always pick up on being thirsty, so needs prompting to drink enough on any day, but of course in the heat this is extra important. And heat, dehydration, and electrolyte imbalances can all contribute to a higher risk of seizures.

One thing we’re doing this week, to hopefully help keep those electrolytes in balance during the heatwave, is making homemade ice lollies with added electrolytes. You can easily find recipes for homemade electrolyte drinks online, and I’ve simply looked at a few of those and then combined ingredients we had at home anyway, and then W has helped me pouring it into the moulds and putting the sticks in.

The definition of what an electrolyte is, is an electrically charged particle. In a nutritional context, they are minerals which our body needs for several important functions, including for hydration and good functioning of the nervous system. Examples are potassium, sodium, magnesium, calcium, phosphorus and bicarbonate.

I hope you’re coping okay in the heat, if affected. Months ago I was hoping to see The Cure tonight in Wales, but although still a little disappointed, I’m also kind of thankful to be at home in this weather, rather than in a sunny field outside Cardiff 😬🥵 Music for this post provided by REM - another excellent band, who I saw live many years ago, at Roskilde festival ☀️🎶 by @sensationallearningwithpenguin

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4 months ago

ONWARDS…

Well, I clearly jinxed things with my latest post being so positive, sharing about us having reached 3 months of no tonic clonic seizures, plus other good things such as our first visit to W’s special needs dentist. Within a few days from posting that, W had a TC seizure 😔 And then a couple of days later we had a not so successful second visit to the dentist. And this week has felt kind of heavy, not least due to a tragedy affecting a family in a fb group I’m in. As someone else in that group said: “When one epilepsy mum cries, we all cry” 💔

Against that backdrop, I feel quietly thankful. I’m thankful that W’s seizure was relatively short, and that he’s recovered well. I’m also thankful for the dentist being very kind and understanding, and we’ll try again (there’s nothing that needs doing urgently, we’re just working towards coping with having his teeth examined etc). Most of all, I’m thankful that we’re still here, and we’re okay. Onwards… x by @sensationallearningwithpenguin

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4 months ago

MANY THANKS, MAY! 🌿

Last night, after the final day of May had come to an end, I felt relief and gratitude. We made it through a whole calendar month more without W having a tonic clonic seizure. His last one was on the final day of February. So March, April, and now May - that’s 3 whole months. Almost hard to believe it’s true, and always makes me feel anxious mentioning it, as i really don’t want to jinx it somehow. But not taking a moment to properly appreciate it, and express my huge gratitude for this, would also seem wrong. So here we are, thank you May, for adding yourself to this string of TC seizure free months! ♥️

In addition to this, the month brought a few other - smaller yet still significant - achievements. These photos from just over 2 weeks ago are from Great Dixter @greatdixterofficial , and it was our first “proper” outing in months! As I’ve ment before, W has been happy to go places in the car, but then when getting there, he’s been shaking his head and slamming the door back shut, almost every time 🥴 The exceptions lately have been two nearby pubs, which he’s been happy to visit quite regularly 🙃

Earlier this month, we managed our first appointment at a specialist dentist (for people with disabilities such as autism & LD). Thankfully W happily got out of the car for that! He didn’t love it though, so we’ll see how it goes next time 😬🤞

We also had a first visit, last week, by a community LD nurse (tbh I’m not entirely sure of her professional title, she might be an OT from the LD community team, I’ll need to ask her next time). She’s going to work with W towards hopefully managing blood tests at some point in the future 🙏 She seems really understanding and helpful, so this feels promising and positive, too. Touch wood. (I should be wearing a piece of wood around my neck or something, considering how often I’m using that expression these days 🫣🤎)

Now June is here, and I’m hoping hard for it to be as kind to us as the month of May has been 🙏 Best wishes for the month ahead, for all of you, too x

#gratitude #endofmonthreflections #thankful by @sensationallearningwithpenguin

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5 months ago

SUMMER MODE ☀️
After a long, cool (yet mostly bright and beautiful) spring, hotter temperatures have arrived and it now feels very much like summer 🔥 The past week has been a pretty sweaty one, but I’m thankful that W seems to be coping well so far, despite the heat. We’re generally a family who don’t do too well in temperatures above 25 C, but these past few days have actually felt really enjoyable, with lots of relaxed time in the garden. It definitely helps that it’s covered in mottled shade much of the time 🌿

We’ve had a Bank Holiday weekend here (last weekend), followed by school holidays this past week, so hiding out at home has served us well. A lot of people like to come down to visit the coast on sunny days off, making our surroundings a bit too busy for our liking 🫠

But yeah, it’s been a good week for us, and W even went into our little pool a few times, which he’s not felt confident/comfortable to do more than a handful of times in the past two summers. So that was great! Of course it comes with a little bit of nerves and constant need of supervision these days, because of epilepsy. But overheating and dehydration are potential seizure triggers, so anything to keep him cool and hydrated is a good thing 💜

I would have loved to post a picture of him in the pool, but as our account is public I’m reluctant about pictures that aren’t fully clothed 🫤 So instead you get this photo of our plates from our dinner (evening meal) in the garden the other night. Three versions of a potato salad. Mine, W’s, and hubby’s - but can you guess which plate belongs to which person?? 🧐🤔💛x by @sensationallearningwithpenguin

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5 months ago

EPILEPSY UPDATE 🧠

It’s been a while now since I posted anything about W’s seizures. I know that many of us who have someone with epilepsy in our life are reluctant to say anything out loud about things going well, in case we jinx it. But I come bearing mixed news, so that should be okay, right..? 😬🤞

So, on the positive side (and this really does feel very positive at this moment in time, touch wood) W has gone almost 12 weeks without having a tonic clonic seizure. This is the longest “seizure free” period he’s had so far, since his first TC seizure in April 2024.

On the other hand, he’s not been truly seizure free. Earlier this month he had what I’m fairly sure was a dacrystic seizure. That’s a type of focal seizure (meaning it involves part of the brain, not the whole brain) which presents as random crying, or near crying/grimacing. We’ve experienced this a few times before, and random laughter too (which if it’s a seizure is called a gelastic seizure). As W can’t tell us how he’s actually feeling when these things happen, it can be difficult to tell if it’s due to seizure activity or not. His latest one (which I also manage to film part of, so will hopefully be able to show his neurologist) I think was very likely a seizure, as it came on quite suddenly, and went away quickly too. He was happy both before and after, and I don’t think he was in any kind of pain. He hadn’t had the best sleep though, which is one of his main seizure triggers, so that also makes it more likely.

Then a few days later, he had another unusual episode. He actually fell off the toilet. I was just outside the door. W is mostly independent with his toileting and deserves his privacy, but I’m always at hand for when he needs my help. And since epilepsy, I’m always worried he might fall off the toilet, like he did when his first seizure happened. This time, he very unexpectedly fell onto the floor, and I don’t know exactly how it happened. I know he was safely seated beforehand, and there was no sound before him landing on the floor (I’d hear if he got up, and when a TC seizure starts he’ll usually let out a sound). I rushed in and he was flat on the floor… [continued in comment👇] by @sensationallearningwithpenguin

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5 months ago

AUTISM ADVOCACY - BEHAVIOURS ARE AN INDICATION 💡

After having read Tiffany Hammond’s @fidgets.and.fries most recent post yesterday, I feel compelled to chime in with some thoughts around “challenging behaviours” and access to healthcare!

There is still so much that isn’t well understood about autism, and so much that is frequently misunderstood! And when it comes to healthcare, these things become critical. Especially when a person is nonspeaking and displays challenging behaviours, such as self harm or aggression.

It’s often said that “behaviour is communication”, but is that enough? I believe we need to look deeper than that, and say “behaviour is an INDICATION”. I can’t take credit for that terminology, it’s something I saw elsewhere online a couple of years or so ago, and it’s stuck with me. I’m not saying that “behaviour is communication” is wrong as such, but what do we do with that information? It seems that the conclusion often is that the person showing these behaviours needs to learn to communicate better, and that will solve the behaviours. Or that they need to work on being more emotionally balanced, and learn to show their feelings in less challenging ways. But there are big problems with this…

Very often - maybe almost always? - those “challenging behaviours” are due to something physiological, such as significant physical discomfort, pain etc. Or it can be due to something neurological, such as seizure activity. And how would you feel if you were in great pain, but got told you’d need to work on your ways of expressing that pain, rather than getting any help to actually resolve the underlying health issue? Or if you were given anti-psychotic medication to make you calm down, but again no help with what’s actually wrong?

There are many health conditions which are much more common in autistics, and often more so the more severe the disability. And many of these conditions can be very serious. Yet, when there are “behaviours”, that often becomes an excuse for NOT providing equitable healthcare, rather than an important indication of something that needs investigating. And this really needs to change.

#autismadvocacy #healthcareaccess by @sensationallearningwithpenguin

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6 months ago

“PURPLE LIGHT” 🌲💜

We are now the proud owners of this magical little wood engraving by Frances Halsey of @illustratemybike !
Frances is autistic and nonspeaking, and her art is one of the ways she communicates and expresses herself. Please swipe to read more about her! 💜

I’ve connected with Frances and her mum on here, and I’m very excited to get this artwork up on my wall! Plus they’ve generously sent me a little card with a print of another of Frances’ works, and I’m thinking that will go up in a frame, too.

If you don’t already, go follow Frances at @illustratemybike 💜x by @sensationallearningwithpenguin

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6 months ago

AUTISM & HEALTHCARE… ❤️‍🩹
Today is #worldhealthday and of course it’s still Autism Acceptance /Action/Advocacy/Awareness Month as well, so here’s a post about autism & healthcare which I created last April - still just as valid now!
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#AutismAcceptanceMonth #AutismActionMonth #AutismAdvocacyMonth #AutismAwarenessMonth by @sensationallearningwithpenguin

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6 months ago

AUTISM & EPILEPSY - HOW ARE THEY CONNECTED?! 🧠👀

Today is the second anniversary of W’s first (tonic clonic) seizure, and it’s always felt like some kind of cruel irony that it happened on #worldautismawarenessday of all days… 😒 So, in “celebration” of that coincidence, here’s a post about some of what we know so far when it comes to why autism and epilepsy often coexist. Please swipe through the slides to learn, and as always all comments and shares etc are warmly appreciated ♥️ Thank you for reading, I hope this may be helpful to know about! x

#autismandepilepsy #understandingautism #epilepsyresearch #neurodevelopment by @sensationallearningwithpenguin

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7 months ago