Hydroslide day!!!

Between swimming on Thursday afternoon and this morning Ryan must have asked approx 1000x if David can take him on the hydroslide. It wasn’t going on Thursday (which I knew and was pleased because I don’t do hydroslides lol) and Ryan loves it. So shortly after 10am this morning I dropped Stefan, David and Ryan to the Splash Centre. Alex and I spent some quality time together shopping and picked the others up at lunchtime. Ryan was happy but exhausted. Not surprising considering he was up and down most of the night and then a morning in a noisy environment. 

We had a quiet afternoon – and a complete house search for Percy the train who had disappeared! Ryan wanted to go out again so we did the recycling – Ryan helped this time but then took off and a kind lady stopped him before he ran in front of a car! Then a walk at Gordon’s Bush and Ryan pulled the trolley all the way around.

More loads of washing and Ryan helped rotate between the washer, dryer and baskets – while watching Toy Story… again! I’m starting to miss Moana, Nemo and Dory. They had become usual background noise and now its Woody and Buzz fighting and bickering! Sigh!

Lots of stories before bedtime and Ryan borrowed my spotty cuddly blanket so hopefully he’s tired enough to sleep more than 2 hours in a row tonight! 

Finally Friday…

I woke at “dark o’clock” (our name for anytime during hours of darkness that people should be sleeping) to a small child next to me in bed asking “hold my hand please mummy” and a husband who had decided he would get more sleep on the couch (smart thinking!)

When the sun came out we ventured out to get our Friday morning coffee and then I was dropped off at 303 Parent Support Centre. I have been involved at 303 since it opened, approx 10 years ago, attending mornings of craft, coffee, learning, and meeting other parents. I have made some amazing friends there and had great support at hard times too. I try to pop in some Friday mornings to have some adult conversation and be “me” not “Mum” for a little while.

Stefan and Ryan took the red trolley to Gordon’s Bush and Virginia Lake for a walk. Ryan had turns riding in and pulling the trolley. They hid painted rocks, found some and put money in the box to make the fountain go, before coming to pick me up again.

After lunch we made felt penguins (our Winter theme activity) and Ryan had fun putting his together. They didn’t look exactly like the Pinterest pattern but not too bad! And in true Ryan style he had to taste the glue lol!

Sensory play was Gloop (cornflour and water). Ryan spent a while mixing, then pouring the mix between the bottle and the jug, needing help to steady his hand so it didn’t slosh everywhere. He liked watching it drip through the funnel as it was quite thick.

I asked Ryan if he wanted his tunnel out and he said yes. I got it out of the cupboard and when I took it to the lounge I found Ryan trying to put his train tracks together and he had a little grey train tunnel. He thought that was what I meant! So we put new batteries in Percy and Thomas and he got to play in the tunnel and watch his trains do loops… and wear the monkey hat  (still backwards) that has been a favourite for a couple of days now.

And our exciting news for the week… Ryan has done #2’s on the toilet 3x this week (and only once in his nappy!). This is so great because he is learning when he feels he needs to go rather than the usual “I should have done that in the toilet not in my pants” which is how he tells us he needs changing. We have given lots of praise and he keeps saying “I’m so proud of me. I did poos in the toilet… not in my pants.” Hopefully this could be a turning point after 6 years of toilet training! 

Tired this Thursday… yawn!

Ryan was awake and manic hyper bouncing off the walls at 4am again. I spent 2 hours in his room, answering his never-ending stream of questions that repeated like a stuck record. It was a mission to keep him quiet and stop him escaping to wake everyone else up – which he said he wanted to do! At 6.15 I was about to lose the plot so I swapped with Stefan and got in a half hour snooze. 
Ryan was in fast forward for another few hours and overly affectionate, giving me kisses and saying he loved me over and over… I’m wondering if he realised he had pushed me to my limit. And everytime I feel annoyed with him in my personal bubble I immediately feel guilty as I know many mums, who have kids with autism or are non-verbal, who would give anything to hear that from their child – and I totally understand that! 

One of the goals on our behaviour management plan is to teach ‘personal space’ as Ryan is often ‘in your face’ and touches everyone (hair, faces, bellies…) and while this was kinda cute when he was little and people didn’t mind so much, it’s now not so cute and definitely not ‘socially acceptable’ to touch strangers! 

Ryan did “up and over” handwriting practise worksheet and then we made up a foam alphabet puzzle and sung the alphabet. We talked about the letters and their sounds as Ryan packed it away. And yes, another morning wearing the silly monkey hat… backwards!

Then I had coffee and a well overdue catch up with a friend at our house. I told Ryan who was coming and showed him her picture – from her Facebook page (hope she doesn’t mind) as he hasnt seen her in a while. He was very happy when she arrived and also gave quite a few kisses and hugs! Luckily she didnt mind… and we managed to chat a bit between questions from the energizer bunny and watching the washing machine and dryer working. We sure know how to entertain guests at our house lol. 

Ryan wanted to go swimming and changed into his swim top he found drying in the laundry. I haven’t taken him swimming single-handed in quite a while and was a little nervous about how it would go. Thankfully it was very quiet and we had a fun swim in the lazy river. Ryan got out once to check the hydroslide up close. They didn’t have the usual covers over the slides, which confused him, so he needed to see if they really were turned off… he wasn’t taking my word for it! He had a giggling fit when a lady, in an adjacent pool, was doing aquafloat (exercises while standing on an inflatable mat) and she fell off while trying to balance. I’m hoping she didnt hear his squeals of delight and amusement at her “bellyflop” (his words) but the lifeguard near us did and I could see her watching me try to distract him and change his focus without success lol. After 45 minutes swimming he started to get a little silly, spitting at me and splashing me in the face, so I told him “one more around the lazy river then out and dressed” I repeated that a couple of times until he looked at me and said “yes”. I repeated it once more and we did another round. As we moved towards the ladder I said “climb up and stop. Wait for me.” He replied “wait for you” and did!!! Super proud of Ryan using his “listening ears” and lots of praise, thumbs up and a high five was given!

For the rest of the afternoon we fed Clover, the rabbit, some carrots and played fetch with Toby outside, did housework (which Ryan helped with) and I had a few more coffees as my early starts were catching up with me! I’m hoping with more physical activity today he may sleep longer tonight…fingers crossed! 

Wednesday take two!

I must be tired … I called yesterdays blog Whirlwind Wednesday… and it was only Tuesday!

Ryan woke at 4am and was very demanding… “needing” breakfast, his touchpad, his slippers, and everytime I thought he was settled he came back wanting something else… I just think I wanted me up with him rather than trying to sneak a bit more sleep. 

Once we were all up Ryan decided to wear his monkey hat (that has sat in his toy box for years and only been worn once for 2 seconds). 3 hours later and he was still wearing it, and it was backwards most of the time lol.

Ryan did some bead threading on skewers then Reading Eggs on the touchpad. He traced his name over the pipecleaners.

His support worker came to take him swimming and they sat and drew pictures on the whiteboard and posted blocks before heading out. But once out he changed his mind, saying he didnt want to go, and they went through the carwash and for a play at McDonald’s instead. We can’t figure out why he has changed his mind the last 2x a swim has been offered. 

He practised his name writing and did a scissor skills worksheet, cutting the lines between fisherman and fish, but his hands are very very shaky today and he got angry with them. I’m feeling so helpless with the shaking/tremor in his hands/arms. It seems to be getting worse each day. Hopefully if it’s connected to his meds (his latest MRI was ok so that ruled out big nasties) then it will improve as we wean off them over the next few months.

We made volcanos with some playdough that had dried out. Ryan loves doing this and gets very excited when it foams. Today he was trying to blow the foam!

Maths activities were parking cars in the matching numbered carpark. This was our first time trying this and Ryan did it no trouble at all! He put Dr Suess flashcards in the correct order from 1-5 after I mixed them up. 

He wanted to do water play, melting a frozen block of plastic toys with warm water, but again shaky hands caused a huge mess and he had a meltdown caused by his frustration.

We cuddled and watched an episode of The Magic School Bus on Netflix all about weather and then some Beat Bugs. 

I got Ryan’s peanut shaped Swiss ball out (thanks Kmart!) and he bounced on it, rolled it around, and rolled it back and forward with me.

I downloaded a new learning app on my phone called Starfall (free on Google Play Store) and Ryan discovered a different version of one of his favourite stories “The gingerbread boy” It highlights the words as it reads and was a good pace to keep him interested.

A nice big bubble bath and he watched Toy Story… again… while I cooked dinner. He read his own bedtime stories at bedtime. He has memorised “The Great Big Block of Chocolate” and two Thomas the Tank Engine books “The Close Shave” and “Henry and the Elephant”. He has an amazing memory! 

Whirlwind Wednesday

The day started with a meltdown because Ryan didn’t want Stefan to go to work. Then a meltdown over taking Alex to school. Then a meltdown over not wanting to get out of the car once home again. By this time we were both worn out, my ears ringing from the screaming and tense from avoiding the hits, kicks and pinching. 

I decided it wasn’t safe to take him to his Riding for the Disabled session so text to let them know he wasn’t coming. 

We cuddled down to watch some Beat Bugs (a cool show on Netflix with music by The Beatles) and after about 30 minutes of tight hugs and massage he calmed down. 

Ryan did some Reading Eggs on the touchpad and we read some stories.

Then he asked for warm water and jars so I set up a coloured water tray. He was surprised when he filled the jars and the water turned yellow and blue (I had sneakily added food colouring to the jars before he tipped water in). Then he mixed the water and it went green! After a little while I added buttons and that gave a new aspect to his play, watching them catch in the funnels.

Letter formation practise was done with a tray of salt and a paintbrush… and of course he got his fingers in it, licked them… and said “mmmmm…..” lol. Strange child! Wiping and drying the table afterwards was his heavy work activity.

Next he unloaded the finished washing, loaded the dryer and refilled the washer with more clothes… all by himself! While he did that I set up an animal tray with pearl barley. He was very interested in making all the animals “eat seeds” or the tree. Then he told me it was windy and blew as many animals over and barley around as he could! Afterwards he wrote his name over the faint name I had written in pencil.

Fine motor skills was threading beads on skewers (stuck in playdough). Even though his hands were not behaving (very jerky arms today) he persevered and put over 10 beads on each skewer!

Ryan has been using this green timer a lot today to calm himself down. He did 2 pages in his maths workbook and we moved the beads to a heavier tray because the plastic one kept tipping over when his arms bumped the sides. The flat heavy glass one worked much better.

We read a new book that arrived yesterday from Scholastic. Jungle Bells with a CD sung by Anika Moa! Ryan recognized her picture and said “it’s the chop chop lady” (from her show we went to in the holidays). I was impressed by his memory and making the connection!

A friend dropped in some old keys (for a future craft project) and Ryan took her hand and brought her down to the laundry “Look at my machine. Why is it rumbling?” and they had a conversation about the cycles, the drain pipe, and the rumbling noise! 

Storytime in the car (our Winter theme book The Magic School Bus Lost in the Snow), waiting for Alex after school, and Ryan had a million questions about each button on the dash.

Ryan, Flash and Toby played a game of chase, after Ryan let Toby out the kitchen gate. I was sure it would end in tears but after a while they each went there separate ways.

I put Toy Story on his touchpad, while I cooked dinner, expecting him to complain it wasn’t right (he’s obsessed with movie highlight reels on Youtube – Cars 3, Boss Baby and Moana each have a 20 minute one) but he sat and watched it and then ate all his dinner! Win for me! 

And…  I have heard from 2 families, who follow this blog and I’ve never met in real life, who have been accepted for an “IHC Take a Break” after reading about our break and then applying themselves! So happy for them! If you haven’t heard about it then check out IHCs Facebook page for more information. 

https://www.facebook.com/IHCNewZealand/

5 months into our homeschooling journey…

We have been on this homeschooling journey 5 months now. Some days it feels all new and others like we have been homeschooling forever. Last night, armed with the new information from the OT last week on Ryans sensory needs, and looking over the learning records (this blog printed out in a big folder) I reviewed and revised our goals and looked at what works and what doesn’t for Ryan. 

I came up with a more structured daily timetable, rather than a list of activities for the week. We were doing them as they fitted the day and Ryan’s moods/requests. Now we have also slotted in more heavy work/proprioceptive activities which the OT suggested. I typed up and laminated a list of these for easy reference and stuck it to the kitchen door.

And because Ryan loves to throw in curve balls he woke very pale and tearful so the new schedule went out the window on the first day. I followed his lead on when he wanted to do stuff and when he just sat and needed hugs (which was often). But thats ok. I can cope… says she who loves lists, routine and same same lol.

In the morning we did vacuuming (heavy work), Ryan did a “draw the line” worksheet and wrote his name – all unassisted! We read a new book from our Winter theme – The Ski Lesson. We practised reading words from his early reader “Getting dressed”.

We listened to the “Do your ears hang low?” CD and read the book. Then Ryan had a turn with the Tone Bells we borrowed from the Toy Library. He really enjoyed that! There was lots of movement and jumping up and down!

A couple of new jigsaws from the Toy Library – a grey cat (Ryan put in the head and ball pieces then needed help to figure the rest out) and a magic kingdom puzzle with peg pieces – he did this one without any help! Doing puzzles is something we have seen a lot of progress in over the last 5 months. 

Next thing I know he’s taking off his socks and cuddling down with his favourite blanket and crying. So hard when I don’t know what’s wrong and he can’t or won’t tell me what’s wrong.

We watched Thomas the Tank Engine for a while then did some Reading Eggs on the touchpad. Ryan has done 20 lessons over the 5 months (each has a number of parts to it). The past few times recently I have noticed him getting stuck and going to play the songs rather than actual learning activities. Today I opened random levels for him, that he has done before, and he struggled with those too. Because he doesn’t mind repeating things I have reset the settings so he needs to redo the programme from the beginning, it locks each activity until the one before is completed, which stops him jumping ahead to the easy favourite ones. I struggled with this decision, feeling like it wiped all his progress but then realised it won’t do any harm and if it’s easy he will fly through it but if it’s hard he will build on the bits he has already learnt, rather than getting frustrated with not being able to do it at all, like he is at the moment. 

Ryan helped with the washing, carrying full baskets from one end of the house to the other (more heavy work!)

Ryan was brighter in the afternoon so we made straw rockets. Ryan wrote his name on his and had great fun “blasting” his rocket at me!

The sunshine was calling so we went outside and Ryan wanted Stefans ladder from the shed but settled for talking to Clover (the rabbit), playing fetch with Toby and hanging upside down.

Our Winter theme activity was making rain in a jar. Ryan was mesmerized by the blue streaks as it came through the shaving foam… and then we had to give it a shake/swirl…. just because.

A bit of coloured water play before early bath-time (again he was miserable and it relaxed him), some stories, and a page in a maths workbook “following the numbers”.

Ryan played on YouTube watching his favourite videos… over and over … for the rest of the afternoon. He’s been strangely quiet and had low energy most of the day. Very very odd for him. 

Slow Sunday

With Stefan at work and teenagers in bed till lunchtime, Ryan watched Youtube nursery rhymes and chatted to me while I planned the weeks homeschool activities, wrote a meal plan for the week and caught up washing that had mounted up. 

Ryan did sensory water play – whisking rolled oats and warm water and tipping from bowl to jar and back again. Then he just sat and swirled his hands in it for a while looking quite zoned out.

After lunch we dropped David to a friend’s and on the way home called in at the local pet store, Animates. We haven’t been for a while, as Ryan had been getting too excited running around and putting his hands in fishtanks. He had also been having wicked meltdowns when it was time to leave. I thought we would try again so we talked about eyes only, keeping our hands to ourselves and staying by Mum. All good. We had a lovely time and he behaved quite well but he was a bit disappointed there were only fish and turtles. Last time we visited they had rabbits, birds and kittens as well! We talked about “almost time to go.” Agreed one last look at each tank. Then he started throwing himself on the floor and yelling, jumping up and down all the way to the car. He refused to put his seatbelt on and I had to get out and put it back on him twice before we could finally drive home. We have a special 5 point harness, supplied by the hospital that he can’t get out of, but he gets very distressed when we use it so I’d rather not … but it’s an option if this undoing his seatbelt continues.

The Occupational Therapist who visited last week gave me a few new “transition” strategies to try, that hopefully will help him with when we leave places, as this seems to be a huge issue for him. 

He’s been not wanting to eat today and acting quite tired so that has been a bit worrying. He ate all his dinner so hopefully a good sleep is all he needs!

Sunny Saturday

Ryan spent a while walking around in Stefans sneakers this morning lol. Thought he was hilarious!

Late morning we did the recycling – Ryan opted to stay in the car and listen to music. He was a bit annoyed that he had to sit in the centre row of seats because the recycling baskets were in the back. As soon as the baskets were out he jumped up and moved his booster seat to the back row. We went and brought water from Crystal Valley and Ryan had a nice chat to the lovely people there before we dropped into the Toy Library. He asked them “why is the rolling door open?” which is a question he asks everytime we go. His favourite toy (a wooden washing machine) wasn’t there but he was ok and after I swapped puzzles and grabbed some musical toys he happily came to the car.

Making the most of the sunshine we tidied up the yard (Ryan carrying tyres and movibg his water table – great heavy work) and moved the trampoline to a spot that gets more hours of sunshine. Hopefully this will encourage Ryan outside a bit more on warm days. 

A quiet afternoon of movies and cuddles rounded off the day nicely.

And it’s Friday again…

All up and out the door by 8.30am as Ryan had a doctor’s appointment. He wasn’t overly keen to go so we bribed him by saying after the doctors we would go and get a coffee from Paul (The Village Snob) … and he was out the door like a shot! 

After our caffeine fix Stefan and Ryan went to Gordons Bush and Virginia Lake for a walk. He got to put money in the fountain 2x and had a great morning. 

We spent the afternoon at home listening to music while we drew, read books, posted blocks, and played with play dough.

Ryan had fun throwing the giant dice and counting the dots when it landed. He took the dice with him to peer through the hole in the laundry door (that was locked after a washing machine induced meltdown).

He did a couple of jigsaw puzzles and then “washed” his socks in “the washing machine Jo got for me”.

Late afternoon we needed a few bits from the supermarket and made the error of thinking we could quickly duck in, with Ryan, on a Friday afternoon near dinner time. The packed carpark should have given us a warning, but no, in we went. After about bout 4 aisles (yes, we made it that far) Ryan was dragging himself on the floor, yelling, pushing us … and thankfully most people smiled with the “knowing pity smile”. Stefan took him back to the car while I raced to get the last few items. Back home and grumpy boy in the bath so I ended up eating my dinner (hot chicken bread rolls.. thanks Countdown!) sitting on the hallway floor supervising bath-time… but not very well, if you can see the massive puddle from Ryan pouring water out of the bath, because he knows he’s not allowed and he was still angry/grumpy.

Sensory assessment is back!

I set up a playdoh, shells and sea animal bowl for Ryan to play with. Posting blocks is a current favourite activity. He did a handwriting worksheet practising ‘up and over’ and then whistled along to some music while we did writing, shapes, counting and smiley faces on the whiteboard.

Mid morning Ryan went out with his support worker and they went to Virginia Lake to watch the fountain, the Winter Gardens, the Bird avaries and playground. She said Ryan was really good and happy. A successful outing and I got a big hug and a kiss when they got home.

While they were out I met with the Behavioural Specialist and Occupational Therapist who did Ryan’s most recent sensory assessment. They have given me a big folder of strategies and activity ideas to met Ryan’s specific sensory needs, which in turn should help reduce some “problematic behaviours” (quoting the professionals lol), and help him learn to self-regulate his emotions. They acknowledged that we are already doing a lot of what he needs and they mainly had some ideas to “tweak and add to” what we are doing, so that was reassuring! They also agreed that homeschooling is ideal for Ryans needs, as he has a high level of intense sensory input needed daily that a school would have difficulty finding the time and/or resources to meet… again, very reassuring that we are on the right path… although also a bit daunting at the faith they have that I am up to the job! Basically lots more info for me to process and work through and decide what to try first before I feedback to them how we are doing in a few months.

After lunch Ryan had a walk on the treadmill, played some more with the play dough and sea shells, and punched holes in scraps of laminated card so he had to push hard and concentrate.

Ryan was in fits of giggles helping our lovely cleaning lady with the vacuuming this afternoon. I love hearing him laugh and being so relaxed. And then I set up a sensory tray with water, rolled oats, bowls and some mixing utensils. Ryan requested a straw to blow bubbles in the mix and it was bath time not long after that… he may have got a bit wet and messy lol.

‘Do your ears hang low?’ and the Topp Twins singing it on CD was played a dozen or more times… and he did more drawing on the whiteboard but then had a short meltdown over me swapping his wipe-off cloth for a clean one. 

Ryan was very excited to tell Stefan about his day, after he got home from work, with big stories about his vacuuming adventures and trip to the lake. He is so lucky to have awesome support workers!