Autism

  • Life of a Bear in Lockdown

    Many Autistic people thrive on routine. Bear is usually one of those so I assumed he would struggle without them. Surprisingly, Bear has reacted quite well to the changing routines that have come with COVID-19 lockdowns. 

    First Lockdown Fears

    In WA, we have been very lucky and had minimal lockdowns.

    When we had the first lockdown, there was talk of it lasting 6 months, I remember calling my parents in the UK in tears because the thought of being locked up with a hyperactive bear terrified me.

    Wonder Woman in tears from lockdown
    Even Wonder Woman would struggle with the thought of 6 months in lockdown.
    Bear climbing a tree in the dark
    Climbing doesn’t stop just because it’s dark.

    Thankfully, that first lockdown didn’t last 6 months and, living in WA there is so much space, we were able to find plenty of places for our outdoor time.

    It “may” have been a tad longer than our allotted hour, but when there is no one else around, why would we rush home to the confines of the house.

    Empty beaches,
    Clear woods,
    Very early morning walks at the local oval.

    We managed to fit in plenty of outdoor time.

    Online was a No-Go

    We tried online school. Bear’s school created online platforms for the kids to submit work we could download first. There were regular Zoom meetings where the teacher would read stories. He was able to sit through some of it, but as he compartmentalises his life, he found it very hard to do schoolwork at home.

    Telehealth was attempted for his therapy sessions. His speech therapist set up a session with him on his iPad. I tried to get him to sit down and listen, but he quickly became very upset and he became the most violent towards me than he has ever been in his entire life.

    His therapist saw this and quickly shut down the session. The benefit of having all his therapists coming from Down South Therapy, she was able to make the call that Bear needed face-to-face sessions to continue and he was a priority for all his therapists. They continued to come to the house during lockdown. There were a few changes which he did struggled with a bit. 

    For example, he is a very touch-based bear. Not surprising when you understand he is a deep pressure sensory seeker. When they had to insist on some distance between him and them, he didn’t really understand and would still scoot over to them. He was so used to being able to sit up close, lean against them or even sit on their knee (not so much anymore as he is getting so big now!), his comprehension of not being able to even touch them just didn’t click.

    Witnessing this with my Bear meant that when we next saw his paediatrician, I was not surprised when he said that many of his autistic patients did not cope well with telehealth appointments. The popular ideology that all autistic people are introverts is being shown more and more to be false and my Bear is the perfect example of that.

    Routine, Schmoutine!

    Other than these few changes, he coped very well with his lack of routine. He did ask why he wasn’t going to school, but he was ok with not going. I will admit there was a fair bit of screen time with either his iPad or the TV, but he has never been a couch potato with his screen time.

    In fact, he is very active even when watching TV. The TV is regularly abandoned so that they can act out whatever they have just watched. Bluey is regularly re-enacted which is one reason I love that show. If you haven’t seen it, please do yourself a favour, no matter what your age is and watch it!

    I was a little nervous when it was time to go back to school. Grateful! But worried about another change in his routine, even if it was back to “normal”. 

    ? How would he cope with the extra handwashing and sanitising that was needed?

    ? How would he cope with seeing most of the adults with face masks on? 

    ? How would he cope with the limited people he could interact with at playtime?

    Yet again, my Bear surprised me, and I think most people at school when he walked in on that first day back as if he had never been away. Straight back into his normal school routine. Perfectly happy with sanitising his hands regularly. In fact, he and Frog remind me to do it when we go to the shops even now. It’s their normal.

    Our second lockdown came straight after the long school holidays so no real difference to how we had been living over the past 8 weeks anyway.

    With this latest lockdown, it’s currently only three days over a long weekend. So again, no change to our normal routine other than not being able to go to the park, like we would have done. We had plans to go on the Rediscover Rockingham Tram as it was the last weekend it would be running, visit the local Rotary Sunday Market to scour through the toy section for more Transformers and then just frolick along the Rockingham foreshore while the weather was still warm. But these activities are not routine, so he will be fine with not doing them.

    Keeping some of the old routines

    local park with the sun rising in Rockingham
    Seeing the sun rising on our morning walk

    We still have our small routines within our day. We will get outside every day in some shape or form.

    He will still get his sausages, baked beans, cheese and toast for breakfast. He will still be able to watch his YouTube videos and re-enact them around the house. We will still eat dinner at the table (a fairly new routine since Husband stopped FIFO work), go straight into a bath after dinner, into PJs for quiet time before bed.

    He will still, sadly, wake at 5am with fully charged batteries up his bum. He will still be naked far too much. 

    Plenty will still be familiar and comfortable. We have a few activities planned to keep them both entertained, but mainly it will be just trying to keep sane until we can be out of the house as normal.

    Who wants to be “normal”?

    “Normal” has never been a word we embrace in our house. “Team Weird”, as the Frog likes to say, have always needed to do things a bit different.

    So maybe that’s why he has coped so well. 

    Being different is our normal routine.


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  • Sensory Processing Disorder – Part 5; DEEP Pressure

    Updated April 2021

    “Tackle me, roll on the floor with me, give me bear hugs”

    Sensory seeker vs Sensory Sensitive
    Illustration to show Sensory seeker vs Sensory Sensitive

    For Bear, there is almost no such thing as too much Deep Pressure. I can lie on top of him with all my weight and tickle him till he cant barely breathe, and he will beg for more if I stop.

    Boy in a green lycra bed sock looking like a caterpillar to help with sensory issue
    A green lycra bed sock becomes a caterpillar.

    He loves it all. Craves it. Begs for it.

    • Rough play.
    • Strong hugs.
    • Steam rollers on the trampoline.
    • Weighted blanket on his bed.
    • Lycra bed sock as a stretchy sack.

    He also finds ways to give himself deep pressure when he needs it.

    Dr. Temple Grandin invented the Hug Box, a deep pressure device, while she was in college.

    Bear has the Dino Deep Pressure Suit.

    Dino Deep Pressure Suit to help with autism
    Dino Deep Pressure Suit (Patent Pending)

    The suit itself is actually getting a bit small, but he increases the pressure he receives while wearing the suit by stuffing soft toys inside.

    He sometimes walks around the house with his suit stuffed to the brim.

    I’ve seen him admiring himself in my long length mirror!

    But I regularly find him just lying quietly in his room in his stuffed suit. I’ve even found him fast asleep.

    We’ve used compression vests in the past from JettProof, an awesome Australian company who designed these vests to help their son Jett who also has Autism. These worked for a few years and his kindy teachers could tell when he wasn’t wearing it. But he isn’t so keen on wearing them now which shows how his needs are changing as he is growing up.

    But I like the fact that he is finding his own ways to deliver the deep pressure that he needs when he needs it. He will still ask for big cuddles from us when he needs them and I will always give them to him. No matter what age.


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  • Sensory Processing Disorder – Part Four

    Updated April 2021

    “I love taking risks, jumping from high up and crashing into things”

    Sensory seeker vs Sensory Sensitive
    Illustration to show Sensory seeker vs Sensory Sensitive

    When Bear was about 2 years old, I would flinch when I would see him charging towards me as I knew this meant a head butt to the crotch! I learnt quickly to turn my hips and bump him back with my hip and send him flying! Hilarious! We both thought so anyway. Onlookers might have had a different opinion.

    Crash, Bang, Wallop

    But that was a major stage for him. Crashing into things. Usually me, but anything was game. Thankfully he isn’t like that now but he still loves jumping from high up and taking risks.

    It’s a steep learning curve but I had to learn to let him go for it so he could challenge his own senses and abilities to see what he was capable of.

    One of our local parks has a high climbing wall. He scaled that by the age of 3. Not so much fun trying to get him to come back down though. So I had to make sure he could take risks in a controlled and safe way.

    How to keep a sensory-seeking Bear safe?

    • When he was very young, I could only go to parks that were enclosed otherwise he would run away at the first chance he got
    • We chose parks that have climbing walls designed to be scaled.
    • He loves parks with spiderweb style rope structures. That means if he falls it won’t be a drop straight to the ground.
    • We have become less precious about him climbing all over the couch and dive bombing from the table to the couch (while teaching him he can’t do that at other people’s houses).
    Bear jumping taking risks as part of autism
    Crash landing after school

    Despite requesting a specifically design crash mat from NDIS, they continue to state that it would encourage unsafe behaviours. I have the complete opposite opinion. He will follow his impulses anyway, but the crash mat teaches him how to chose safe parameters in which to follow those impulses. Same as teaching him that he has to stop and look both ways before running across the road to the park.

    I don’t want to completely stop these behaviours. If it wasn’t for risk takers, we wouldn’t have extreme sportspeople like Big Wave Surfer, Laird Hamilton or Freediving Champion, Hanli Prinsloo. They approach their sport with intense knowledge of their surroundings, supreme fitness and knowing their own limits. This is what I want to teach Bear. Not that his actions are bad, but that he needs to be smart about them.

    At the moment his favourite thing to do is jump off the jetty at our local boat ramp at the very end, usually off the top of a bollard. He built up to it though.

    At first it was just jumping off the small walls into shallow water.

    Then it was jumping off the middle of the jetty near the ladder and jumping in close to the ladder so it was easy to grab.

    Boy jumping into ocean at Port Kennedy Boat ramp in Rockingham

    Now he just throws himself off willy-nilly into the water and confidently swims back to shore or the ladder.

    He is constantly learning about his own physical boundaries as well as how to be independent and strong. As a Seeker, he is constantly searching for input but so far he hasn’t wondered if he can fly off a cliff.

    Let’s hope he doesn’t try.


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  • Sensory Processing Disorder – Part Three; Barefoot Bear

    Updated April 2021

    Sensory seeker vs Sensory Sensitive
    Illustration to show Sensory seeker vs Sensory Sensitive

    On my Facebook Blog What Katie Wrote, I wrote a post about my barefoot Bear and his issues with shoes. a few years back.

    He is still a barefoot bear and still takes his shoes off as much as he can, but he has come a looooong way from where we started on the first day of kindy.

    Bear with his actual shoes on for school. Goal Kicked!

    But you know what, when I come home, the first thing I do is take off my shoes. I rarely have my shoes on because the floorboards are nice and smooth and I don’t want to get dirt from my shoes into my house.

    Back in the day when I toiled at a desk for a living, I constantly had to remember to put on grown up shoes and not walk around in thongs or bare feet all day.

    It’s not that I don’t like shoes, just that bare feet feels more natural to me.

    And I have a killer tan line!

    I’m a grown up. I understand the social rules that I can’t go around in bare feet all the time. But Bear still struggles with this. He is only 7 years old, why would he do something that doesn’t come naturally to him?

    Which is why I am very grateful to the teachers and EAs at school understanding Bear, realising he isn’t just being naughty and helping to keep his shoes on as much as possible.

    Read Bear’s Barefoot Journey Here

    He continues to improve. He knows that he has to wear shoes when we leave the house, so there isn’t much argument, just constant reminders!

    His shoe collection is very limited, especially compared to his sister. That is a good thing though as it means he doesn’t too much of a decision to make when it’s time to put shoes on.

    He wears simple shoes like crocs and sneakers with velcro. I am NOT looking forward to teaching him to tie his shoelaces!

    Socks are still much of a struggle so many times I don’t even bother. It’s easier to wash his shoes every now and then than deal with the meltdown or pick up the threads of the sock he has pulled apart.

    So far, the most important reason to get him to wear shoes at school is to stop him from eating his toe nails.

    But that’s a gross story for another day.


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