2018: Friday 11th May

Mr Energiser Bunny was up most of the night and very talkative in the morning. Julie came and picked him up late morning for a couple of hours. The peace and quiet was so nice and Stefan and I popped into town to do a few jobs.

Julie sent me photos of Ryan exploring and using her taps. He “helped” with the washing. And he got to go for a drive in her bus and use the huge bus windscreen wipers!

Ryan came home with chicken nuggets and Havoc managed to steal a couple, making us all laugh when he got a Burger King paper bag stuck on his head.

Ryan had a look at the box I made with “astronaut gloves” that you put your arm in the explore “moon rocks”. It only held his interest for a couple of minutes and then Stefan took him out for a walk.

He has been pretty full-on today, and wouldn’t settle to read or play with toys, preferring to bounce around and talk non-stop, mostly asking questions, but also telling us about the bus and Julie’s house and that the street lights were still on. He was quite tearful at bedtime and said “I’m just so tired” 😦 Hopefully he has a good sleep tonight 🙂


2018: Thursday 10th May

On doctors advice we stopped one of Ryan’s ADHD meds this morning. He has been on it for a couple of years and they want to see what effect it is having by trialling a few days off it.

Stefan made Ryan’s breakfast before he left for work, Ryan ate it and asked for more. I made my coffee and we had toast together before he disappeared. I found him sound asleep in my bed… and he stayed there until 1.30pm! Now we were expecting him to be more hyper or much the same but that hasn’t happened yet!

After he woke his usual stream of questions began and he seemed bright and happy but he complained of a sore stomach after lunch. The rest of the day was spent either lying on the couch or in the toilet with an upset tummy. Poor boy! I was super proud of him for getting to the toilet each time, which is a huge improvement on the last round of upset tummies a few weeks ago.

The rest of the day was spent relaxing and cuddling cats, even Flash was home.

2018: Wednesday 9th May

Ryan was up and down all night last night so I only got about 3 hours sleep, meaning a very tired Mummy today! I almost panicked when I went to make more juice up and discovered we had no more orange sachets. For months Ryan will only drink orange coloured juice, watered down 1 sachet to 3 litres of water. I made up a raspberry one and at breakfast he said “that’s the wrong juice, where is my juice?”. I replied “we ran out but that’s ok, I made this one for you” – plastered on a fake confident “no worries here” grin and waited… And he drank it! Nothing more was said and I refilled his glass for each piece of toast (as is his routine) and he ate 8 pieces of toast!!!

After breakfast Ryan asked to “go sleep in your bed Mum” but I reminded him Julie was coming and that perked him up. Today he learnt Egg is Hēki, coloured in a boiled egg and, of course, did smiley faces. Julie brought her guitar and they sang together. Ryan decided it was bath time and nothing would convince him to wait… so Julie took the lesson to him and put laminated posters with colours in the bath! He wasn’t quite himself, we have had a few days of absence seizures making him nauseous which means lots of bathroom trips, losing bladder control, and constant snacking on toast (to help the nausea).

We read Space Journey, did playdough haircuts, water painting, and a star button search in coloured rice. He found the 5 buttons and put them on the chart I made as he found them.

Ryan did star painting with cookie cutters. I gave him some blank paper to use up the yellow paint. He really enjoyed this activity 🙂

I got a run of unexpected important phone calls and Ryan decided that was the opportunity to flush the toilet over and over and over until Alex got fed up and growled at him. Usually Ryan ignores him but today we got huge crocodile tears. He calmed down after some hugs and I put The Polar Express on for him.

Late afternoon when David got home Ryan blurted at him his version of the day “Julie came and her car disappeared! And the grocery truck! And Alex told me to stop wasting all the water! And I had fun with Julie!” David’s reply “Anything else happen today I need to know about?” while laughing lol. I didn’t realise until then that it bothered him that Julie was dropped off and he saw her car leave. Her car usually stays so the change confused him. But he was ok, just needed to process it.

He had another bubble bath, played with black slime, posted coins into the money box, looked at a new solar system poster I put up, and played games on the touchpad (tracing letters and sorting washing into lights and coloured – seriously you can find anything on the internet!). He ran off and came back with ‘Zolar and Zina’. He asked me to read it to him… and then he read it, while pointing at each word, to me!!!

Stefan’s plane was due in at 7.20pm and there was no way Ryan would go to bed without seeing Stefan so the mission was to keep him up and settled so he could go straight to bed when we got home. The plane was slightly delayed but Ryan did really well, especially considering all his meds had worn off and he was non-stop bouncing, talking and excited.

2018: Tuesday 8th May

Ryan slept in until 7.30am, although I’m not sure when he climbed into bed with me so he was obviously up during the night. He watched Sherriff Callie while he ate 6 pieces of toast! Then he said “come with me” and took me back to my room and told me to lie down. Next thing I know he had slept for another hour!

Alex came home from school yesterday full of a head cold and woke today still miserable. After Ryan woke around 9.30am he spent the rest of the day with upset tummies and dry retching. That changed my plans as I was supposed to be going to a funeral. I cancelled Ryan’s support worker, set him up with The Polar Express and found my headphones so I could watch the Livestream of my friends funeral (so grateful for modern technology!) Thankfully Ryan was quite calm and didn’t need me much. When he got bored I got the playdough haircutting out and that kept him busy until the service was done.

Ryan asked for a bubble bath so, even though it was only lunchtime, I ran him one. Why not, especially since he wasn’t feeling well.

He did a Thomas the Tank Engine paint with water, scissor practise cutting lines to stickers, reading, the wooden alphabet puzzle naming letters as he put them in, and coin posting (fine motor skills).

I needed some fresh air so Ryan and I drove to Kai Iwi beach, approx 15 minutes from home. It was a bit windy but sunny and the waves were really loud! Ryan had a great time throwing rocks and sticks into the waves and was so calm I didn’t need to hold his hand. We talked in the car about “staying close to Mum” and “no running into the water” and shock horror he listened! He did lots of jumping up and down and got sand all over his hands. I said “brush them on your pants” but somehow he heard “lick them” lol 😉 The sea air and laughter was exactly what we both needed 🙂

Late afternoon we had to take Flash to the vet to get his check up after surgery last week. They gave him the all clear and he is allowed to roam freely again. Ryan wanted to come into the clinic with us and was really good except for switching the light off, plunging us into complete darkness, as the nurse was examining Flash. David was quick and flicked it back on and then we were on our way home. Ryan had a short play at the park by the vets and found a painted rock. We said to rehide it but he threw it over the fence… so technically it is rehidden… in the garden by the park.

After a very long day I treated us to Burger King for dinner and Ryan had another bath/shower. David read his bedtime stories tonight (one more sleep until Stefan is home from Auckland) and I tucked him in.

2018: Monday 7th May

We were up and out the door before daylight to take Stefan to the airport. Ryan held his hand as they walked inside and checked in. We went outside to see the crew loading the baggage and preparing the plane. Ryan called the big ladder “the plane walk” but they didn’t need it for this plane. We went inside and outside checking everything out and Ryan put money in the wishing well. He loves watching it spin around. The airport was surprisingly busy for 6am and Ryan started to get overwhelmed. He wouldn’t say goodbye so we headed to the car. Ryan wasn’t happy about leaving Stefan and kept repeating “Mum, can I kick Dad off the plane?” We drove around the carpark and found a place we could see the plane take off and Ryan sat in the front with me, playing with the windscreen wipers. After we waved to the plane in the air we headed home for breakfast.

Ryan had a few looks at our visual on the fridge and knows it’s “2 sleeps” until we go back to the airport.

He did some Reading Eggs while lying on my bed and then we read ‘Spottydoddils in Space’ (early reader) and ‘The Magic School Bus Takes a Moonwalk’. While I did some housework Ryan sat on David’s bed (he felt special because he’s not allowed in there when David is out but I let him today) and watched The Magic School Bus Gets Lost in Space.

Ryan counted and coloured in 5 ships in his Maths workbook and counted pebbles onto uno cards.

He played fetch with Toby in the hallway and the kittens all joined in too. It’s so funny to watch them all tearing down the hall after a yellow plastic ball.

We went outside to hang out washing and Ryan fed Clover silverbeet from the garden and some yellow flowers he found in the grass. He talks to her so nicely and she comes to see what he has for her but if she ignores him he gets grumpy.

Inside for lunchtime and Ryan watched some Thomas the Tank Engine on tv because he asked for The Polar Express but I couldn’t find the disc. When I did find it he insisted I put it on but he paused it to come and help me make a banana cake. I got the recipe I wrote nice and bold for him and we worked through it step by step. I have labelled all the ingredients so he can match them too. I even got brave and let go of the beater so he could have a turn by himself (not too much sprayed out of the bowl thankfully lol)

Ryan watched the rest of The Polar Express and then decided he wanted a bath.

After his bath he played trains with Jasper. I love how Jasper is quite happy to sit and watch Percy go around and around with Ryan. The other kittens come and go but Jasper sits with Ryan until Ryan moves away.

Ryan posted burgers into Pop the Pigs mouth and asked to do a painting. I had a Paint with Water page that has an alien in a spaceship and a rocket which fitted nicely with our Space theme.

Ryan watched The Polar Express again while I cooked dinner. He has had it on repeat in the lounge since I found the disc. Now I’m remembering why it got “lost” lol. It’s not the movie that is annoying, it’s the constant questions “Why is the train in ice?”, “Why is he on top of the train?”, “Why do they have snow on top? Are they going to the North Pole where it is cold?”, “Did I go on a steam train with Dad?”, “Was it a big trip on a big track?” He doesn’t wait for answers, he just asks another question.

And in breaking news… the throat clearing/ grunty noise has gone again! 6 and a half days! A new record! Now hopefully we get a few months break from it like usual!

Ryan wanted to go and get Stefan from the airport at bedtime but we looked at the visual again and he told me “in 2 sleeps”. He let me read him a Mrs Wishy-Washy book. I offered any of his usual books Stefan reads but was told no. He cuddled down and settled quicker than I expected considering his usual evening time with Stefan didn’t happen.

2018: Sunday 6th May

3am was wake up time and I found Ryan bouncing on his bed naked happy as Larry! I dressed him and tucked him back in but he didn’t resettle until close to 6am and then only for an hour and a half.

Flash came out of his crate for breakfast and we discovered he had ripped out his drains and most of his stitches overnight. They were supposed to be in until Tuesday and the stitches 14 days. An urgent call to the vet told us not to worry and they will see him next week. Phew! Flash spent the rest of the day looking for doors or windows to escape from but he has to stay in with open wounds.

Ryan got a wipe-clean book out and coloured in a fire truck. Then he helped me make a caramel slice. He asked to make popcorn so we did that too.

He did a Thomas The Tank Engine paint with water painting and played with the magnetic fishing rods.

Later he went back to do some more painting, and he got out a maths activity we did months ago. Uno cards and black pebbles – putting the number of pebbles to match the number on the card. Ryan never usually gets games or activities out. He will ask occasionally but usually prefers screens or does what I have set up, so it was interesting today to see him choose different things to do.

We had another toilet flushing episode – this time it was a wooden teddy bear and I didn’t know he had done it until I went to use the toilet myself. I’m really hoping he listens when we tell him he isn’t allowed to flush random items before we have a blocked toilet!

But in good news Ryan ate a segment of manderin. Doesn’t sound that exciting to most but when fruit hasn’t passed his lips in months then it is kinda exciting!

We read “That’s not my elephant” and put up a visual for the coming week. Stefan is away for work, which only happens approx once a year but Ryan really misses him and it can bring out very challenging behaviours. I’m hoping seeing it’s not long that he is away will help lessen any anxiety.

While Ryan was very busy himself today I did some activity prepping for our space theme that we are continuing with. Mostly fine motor skills ie coin posting, cutting, pegging, and button hunting in rice. I also made a box that you can “discover” rocks like astronauts do by feeling through thick gloves, by cutting holes in the side of the box and taping rubber gloves on. I have a variety of rocks/stones/balls to feel in the box, when you put your hand in the glove.

2018: Saturday 5th May

Day 6 of the grunty throat clearing and its driving us all bonkers!!! His previous record was 4 days. If you turn the sound up on this video you will hear it. Sometimes it’s quite soft like this, and others it’s quite loud.

Today Ryan decided he would see what happened if he flushed random items down the toilet. He has never done this before so we were totally unprepared for it.

“What was that noise Ryan?”

His reply “Nothing!”

“Ryan, what did you do?”

Flushed it

“Flushed what?”

The thing

“What thing????”

The nail

Sure enough, a metal screw was in the bottom of the toilet.

A couple of hours later… Splash! And Ryan racing down the hallway laughing.

“Ryan, what did you put in the toilet?”

Paddington. I flushed Paddington down the toilet.

Me to Stefan “Are you going fishing or me?” Stefan kindly retrieved the Paddington keyring from the toilet bowl and binned it. And we had ANOTHER conversation about what we do and don’t flush down the toilet, sigh!

Stefan took him out to see a friend, do the recycling and for a walk at Gordon’s Bush.

We have watched movies, played with kittens, done non-stop loads of washing (I don’t know where it all comes from!), and had groceries delivered and unpacked. We have read stories, played Angry Birds on the touched pad, played with Percy and the train set, and had a huge bubble bath. We gave Toby (the poodle) a haircut and a bath. Ryan helped/hindered – a mix of both lol. Ryan tried “helping” me give Stefan a haircut but I was terrified he would lose an ear or get a bald patch everytime Ryan said “give me a turn” while snatching at the clippers!

So a very productive busy day! And Ryan decided he didn’t want to go to bed tonight so he strung story time out until after 7.15pm, which doesn’t sound late but he hardly sleeps during the night, is up way before daylight in the morning and has medications due at 6pm that make him drowsy so he’s normally tucked up in bed by 6.30-6.45pm and is quiet even if he’s not asleep. He has big plans for tomorrow, he was telling me all the different places I needed to take him, so I better get some sleep tonight too!

2018: Friday 4th May

We are a house of Star Wars fans so today being May the 4th I had planned a few Star Wars themed activities. Ryan has a Darth Vader voice changing mask he plays with occasionally and laughs when he pushes the button that says “I am your father”. He hasn’t seen any of the movies but knows the main characters from coffee mugs, toys and painted rocks we have around the house.

Ryan was wanting to do his usual Friday routine with Stefan – getting coffee from Paul at The Village Snob and then walking around Gordon’s Bush, so didn’t push him to do what I had planned.

We read yesterday’s space books again, at Ryan’s request, and then Stefan and Ryan headed out.

I took all Ryan’s bedding to the laundromat (massive nappy leak through every layer overnight) with a book I wanted to read. It felt strange being at the laundromat without Ryan but he only enjoys short visits there now and I knew I would be a while. He knew I was going and didn’t even ask to come, which was very odd!

Unfortunately I didn’t get to read my book as a rather bad car accident happened just up the road and there were emergency services and people everywhere. I didn’t want to get in the way so I stayed by my car (which was blocked in) and quietly prayed for all those involved. Looking back it was very fortunate that Ryan wasn’t with me as there was lots of sirens, flashing lights and it was upsetting seeing people hurt.

When I got home with nice clean bedding Ryan was having nuggets and a Frozen Coke while watching a movie. He came outside for a while, fed Clover (the rabbit) and then helped us check on Flash inside.

Ryan has been very worried about Flash and keeps repeating “the vet said Flash needs to rest so he gets better”. He asks to go and check on him often (his crate is in Alex’s room so he has peace and quiet and stays warm) so we have taken him in to see him a few times.

I set up one of the Star Wars activities for Ryan. I got plastic cups and put Star Wars stickers on them. I had a flashy ball and Ryan threw it to knock them off the wooden washing machine. He really enjoyed it and set it back up to try again a few times. He has really good aim and lots of force behind his throws!

While Stefan did bathtime I popped out with the older boys. At the fruit/veg shop David chose a “giant banana” to buy – he had never seen a spaghetti squash before. At home Ryan was very interested in it too… until he decided to throw it across the kitchen and it split open! Now I’ll have to Google how to cook it 🙂

He settled easily at bedtime, which didn’t surprise me as he was up and down all of last night and didn’t go back to sleep at all. I got a couple of hours at 5am after I put the tv on and told Ryan to NOT call my name again until the Minions were finished, and he listened to me!

2018: Thursday 3rd May

Ryan and I decided a home day was needed. As I did the morning dishes I found Ryan reading in the lounge and playing with the sequined cushion that made light spots on the wall from the sun. He brought me the fishing set from Julie yesterday and told me “I caught it, I caught a fish Mum!”. Then we went outside and Ryan fed Clover silverbeet piece by piece and she ate it from his fingers.

Ryan asked to do Reading Eggs, which he hasn’t done for ages and he spent 20 minutes following instructions, doing the activities and getting the correct answers! We read the books that go with the lessons he has already completed so far. His new early reader fits our Space theme and he thought Zolar and Zina were so funny when they landed in the Slop Drop. We read a Kids National Geographic book on space and Ryan was really interested in the “hot planets” and told me the planet on the cover was Saturn!

We did some dancing to our friend Ed Sheeran in the kitchen (pleased we don’t have hidden cameras lol) and Ryan asked me to “cheese me”. In the lounge Ryan called me to say “I’m doing gentle hands Mum, see!” patting kittens and then he went on a Havoc hunt finding him behind my dresser mirror on the window sill.

Toby wanted a bit of attention so Ryan played fetch and was very excited when Toby brought the ball back and dropped it at his feet. Jasper watched Ryan feed Pop the Pig and lay in the sunshine.

Ryan asked me to get Percy out so he could play trains with Jasper. He was explaining to Jasper that trains go “chugga chugga chugga chugga” with huge arm movements.

Ryan did playdough haircuts, found Havoc on the washing machine, watched Jasper chase his straw, and Dipper was mesmorised by the dryer going. Ryan found the fishing and showed Dipper the fish he caught. Then, while the kttens had a well-earned nap, Ryan played with water beads and did some colouring in.

It was a lovely day full of laughter and fun. Ryan was really calm, no biting or lashing out and he gave me lots of hugs.

The only downside to our day was an urgent vet visit with our oldest furbaby Flash, who we got when Ryan was a baby. He was having trouble walking and his tail was droopy. The vet needed to do surgery and put drains in to the top of his tail to fix a massive abcess. Ryan was very worried about him being in “the barn” (Ryans name for the cat carrier) and David played with him at the park next to the vets while Alex and I took Flash in. Ryan wasn’t happy about going home without Flash but we explained we would go back and get him soon. After dinner Alex and I picked Flash up and Ryan saw him in his crate very sleepy. We explained he is sick and we can’t touch him or let him out of the crate until he is better. Ryan seemed ok with that and was happy Flash was home.

2018: Wednesday 2nd May

Ryan took over Stefan’s side of the bed again sometime during the night and in the morning he told me “I rolled over and Dad fell out” (wonder where he got that idea… stupid nursery rhymes lol).

I had a busy day of things I needed to take care of so I had organised for support workers to help with Ryan.

Julie came and took Ryan to visit her house. He met more of his extended family… and discovered a Freddo frog on the washing machine! And was very pleased to see they had a toilet he could flush too lol.

When she dropped him home she brought a cool magnet fishing set and they played for a bit. Ryan got David to “fish” with him after school too.

At bedtime he said “I had fun with Julie today. And she did the back wiper for me”… He asked her to turn the back window wiper on her car on as she left and was very excited when she did 🙂

Emily came to hang out with him in the afternoon so I could do some jobs in town.

The rest of the day was pretty much spent doing loads of washing, which Ryan mostly did himself – he hardly needs my help now except with the soap powder as he knows that’s adults only. We had oodles of dirty laundry as I had cleaned the teenagers bedrooms and changed all the beds in the house. Cleaning is my outlet when I’m feeling upset or stressed and today the bedrooms satisfied my need to clean.

We did do a quick drive into town to buy art pencils for Alex. I had brought some when I was in town earlier but misread the post-it note he wrote me and brought the wrong one’s. Town after school is busy but he needed them for school tomorrow. Luckily we got a park right outside the shop and Ryan and I waited while Alex got the correct ones. Ryan was very very talkative and asked questions about everything he could see… “Why is that light on?”, “Why are those doors open?”, “Will those doors shut?”, “Why do they have wipers?”, “Are they going to use their wipers?”, “Can we buy pizzas?”, “Can we get a frozen coke?”…

He fell asleep quickly at bedtime so must have worn him out today! Yay!