2018: Monday 21st May

Last night Ryan was up till 11.40pm – my fault for letting him sleep all morning and then an afternoon in the car, so not enough physical activity. But on the upside he stayed in his own bed until 6.30am, which was a nice change.

We met Donna at the Splash Centre for swimming and they had lots of laughs. Ryan wasn’t keen to climb out when it was time so he was lifted out, while protesting loudly, but was okay once we headed to get changed.

“It was lovely to swim today. We laughed so much. There was a song playing, Budapest by George Ezra. We sung along. Ryan enjoyed the ooohhhhh bits.” Donna

I had to look it up on YouTube and it’s a song thats on the Curious George soundtrack, which is where Ryan has heard it. I forgot he likes that song 🙂

At home Ryan had a long bath then a shower.

A friend came over, with her son, for a playdate but Ryan wasn’t the best company and wouldn’t share his toys or talk nicely. We ended the visit before anyone got hurt (Ryan was a bit pushy/shovey) and not settling. It was nice to have some adult company for a while but obviously not the right timing for Ryan today.

After lunch Ryan asked for another bath then shower but was out quick as he had used up all the hot water. He helped do laundry and chatted while I made Anzac biscuits and Chocolate brownie. I asked him to help but he wasn’t interested. He used to eat Anzac biscuits so I am hoping he eats some from this lot.

Poor Flash is still suffering from a sore infected tail and is going back to the vet for more surgery tomorrow. So today he has been on his favourite blanket in a washing basket and had lots of cuddles. We have to keep reminding Ryan to be super gentle, and Flash was tucked away in my room most of the day.

I tried to get Ryan interested in Reading Eggs and Mathseed but he just pushed the touchpad away, and was the same with books. He just wasn’t in the mood for anything much. I kept getting him drinks, Nutella toast and chicken potato chips, as he has been hardly eating for days, and he slowly snacked all afternoon.

At dinner Ryan got his painted food rocks and kitchen scales out and was asking me to read him the numbers as he added rocks. He ate most of his French toast for dinner (another food he had been refusing for the last few weeks) so hopefully with more food in his belly he sleeps better.

Stefan read him 4 books at bedtime (not sure why he was allowed to read to him and I wasn’t earlier but oh, well!) and he fell asleep not long after tuck in.


2018: Sunday 20th May

Last night Ryan snuck into my side of the bed while I was in the lounge watching the Royal Wedding. It was after 1am and the ceremony had just finished when I decided to head to bed… but he looked so peaceful I went back to the lounge and slept on the couch. Musical beds every night in our house!

I woke as Stefan was leaving for work and he had already fed Ryan 2 rounds of breakfast. As I made a coffee Ryan disappeared and I found him curled up asleep on the couch. So I decided to head back to bed myself, figuring after his long week of not being himself he probably needed an extra catch up sleep.

We both woke at 11.30am!!

After we were all dressed and the house was semi tidy we headed out for the afternoon with family. Unfortunately on the way out the door, totally unprovoked, Ryan grabbed my phone and threw it down the stairs on to concrete, cracking right across the screen. Absolutely gutted. Ryan said sorry but laughed as he said it. I didn’t growl, I was just too shocked.

We spent most of the afternoon on a road trip, which Ryan enjoyed, and arrived home just before dinner time.

Ryan managed to squeeze in doing a load of washing and a nice bubble bath before bedtime.

2018: Saturday 19th May

No photos today. We had a lovely calm relaxing day. Stefan took Ryan out for a short walk before the rain set in and the rest of the day was spent at home.

Ryan’s twitching/jerking has stopped (finally!!) and he is a lot happier, after consulting with his paediatrican yesterday afternoon who adjusted his meds. Today we had no meltdowns, no screaming, no grumping and lots of nice chatting. He responded to questions nicely and gave us all hugs. Such a different child from the last week. Juggling which meds are doing what is such a delicate balance but hopefully we are getting somewhere now and life will be a bit easier 🙂

2018: Friday 18th May

Friday! Yay, Stefans home! Ryan wasn’t too keen on doing anything as the awful twitching and jerking was still going. We convinced him to come for a drive and, while I ordered much needed coffees, Stefan took him for a walk down to see the boat on the river. We popped out to visit Stefan’s Mum and Ryan did a load of washing for her 🙂

We got home to a miserable Flash and it seemed the abscess on his back/tail he had operated on a few weeks ago had come back. I whipped him down to the vet, which didn’t amuse Ryan as he wanted to come too, and they drained some more liquid and he came home to rest. He burrowed his way under a blanket on our bed so I locked the door (to give him a break from Ryan’s enthusiastic patting) and he slept all afternoon.

Dinner time was a bit crazy as Stefan started a light hearted fly swat war with Ryan (to snap him out of a tired grump) and it escalated into a full out chase and giggle fest in the kitchen (thanks Julie for the fly swats lol). Ryan has a really strong arm and David and I both got “whacked” because we didn’t duck away fast enough lol. We did get a few light whacks back at Ryan which made him laugh harder. I was trying to make Toasties at the same time so it was a bit crazy… but nice to have everyone laughing. And yes, David was still wearing his pink clothes for Pink T-shirt Day raising awareness against bullying. I was quite pleased with the result as I was up past midnight dyeing it and drying for him last night!

Stefan was on story, tuck in and lullaby duty as I was heading out to a fundraising quiz night with a friend. I hardly ever go out in the evening and was running on coffee fumes but we had a good night and didn’t do too badly in the quiz.

2018: Thursday 17th May

We woke up and raced out the door at 7.30am to drop Stefan to work as we had all slept in (Ryan was up at 4am but had resettled). He wasn’t too amused on the way home but as we drove I spotted a concrete mixer so squealed and said “oh no Ryan, we might get sucked into that concrete mixer!!!” He spun around looking out the windows trying to see it and found it behind us. It “chased” us all the way up the road until we got home and kept him nicely distracted and laughing at his crazy mum lol.

Donna came to “hang out” and answer Ryan’s millions of questions as he watched the washing machine. He started his new medication today but we didn’t notice much difference. His twitching and jerking body movements have gotten worse over the past week but today was the worst. He couldn’t sit still or concentrate on anything. It was awful to watch, especially as he got tired at the end of the day. He was also twisting his fingers really hard today and pinching the tops of his hands.

Julie came around lunchtime so I could dash out and do some urgent town jobs. She noticed he was quite different today too. He was very quick to snap and yell “stop it” or “no!” if anyone tried to dance or sing or ask him to do anything. He finally managed to concentrate long enough to get his shoes on and they went out to get nuggets and a Frozen Coke, which was good because Ryan had hardly touched his breakfast and refused all other food until then.

The afternoon was spent in the laundry watching the washing machine spin. I just couldn’t get him interested in anything else. The lady rang to say Stefan’s car wasn’t ready to pick up yet and I didn’t tell Ryan, after his massive meltdown yesterday when it wasn’t ready. He kept asking when we were going to get it but I just said I didn’t know :/

The first few days of any medication change is always hard on his brain and body so hopefully we see some improvement soon. I didn’t even get any photos today but did take some videos to show the doctor’s his odd jaw and back twitching that was constant today.

2018: Wednesday 16th May

From the minute Ryan woke up he was asking if Julie was coming today. It was only 5am so he still had a while to wait but a few rounds of breakfast, Paddington Bear, sorting the washing, feeding all the pets, and playing with toys in his room (which he hardly ever does unless we play alongside him) passed the time.

Julie arrived and, while I did dishes in the kitchen, I could hear so much laughter and fun coming from the lounge. They had flyswats and orange balloons – one had a face and somehow they got a Freddo Frog inside it!!! I could hear them blowing up balloons and letting them fly around. I almost wanted to go and join in the fun myself lol!

They went out for a while and Julie got to experience a Ryan-meltdown :/ She managed it well and recognized it as a meltdown, and let me know what had happened when they got home when Ryan had moved out of earshot, which I really appreciated. She also said after the meltdown was over he went into manic happy hyper mode and was 100 miles an hour noise and crazy silly behaviour and laughter, which was how he was when he walked in the door. You just never know what’s coming next! And again, we are so lucky to have such awesome support workers in Ryan’s life!

I took some photos of Ryan showing me Freddo in the balloon after Julie dropped him home.

We went outside and fed Clover and sorted all the recycling into the correct buckets (bottles, cans, paper…) to make it easier when we take it to the recycling centre.

Ryan had calmed a bit and asked to play with the fire station again. I asked if he wanted foam again and he said yes. This time I grabbed the hand beater, rather than the electric blender, and he made the soapy foam himself.

When he was finished we put all the foamy toys in the shower and cleaned them off. Ryan decided he needed a bath so he jumped in next.

Reading today was ‘Donald the Dragon’ and after the first read through Ryan picked the pattern in the sentences. We read it again and Ryan said the last 2 words on each page. The last page made him laugh.

We read through the books we have read so far this week.

Paw Patrol phonics book 3 The Big City had the pups going in hot air balloons and Ryan told me he would like to do that! Maybe one day 🙂

Fine motor skills practise was threading buttons and beads onto pipe cleaners. He played with the clean fire station and some small fire vehicles and helicopters. Then brought me the balloon with Freddo in it. After he tried and tried to pop it he asked me to help him so I snipped the end and he opened Freddo, very pleased 🙂

The fire station toy we have been using for foam is actually a playdough set so I gave Ryan some yellow dough and that kept him occupied for a while, squeezing it through the fire hydrant.

Late afternoon Ryan hung out with David while I went to the chemist with new instructions and prescription from Ryan’s paediatrician, that arrived in the mail.

When I got home Ryan wanted to know when we were going to pick Stefan’s car up. They had said it would be ready today so I rang them and they said not today. When I told Ryan he got very very upset and I had to sit on the floor holding him tight until he stopped shaking and screaming. It didn’t take long (less than 5 minutes) but it felt like longer. I haven’t been able to use tight pressure to calm him for a while so was quite pleased it worked, rather than have him wind up into a throwing things, hitting kicking meltdown. He came and helped swap the washing over and I got dinner sorted.

Ryan went through another “hyper laughing running up and down the hallway until he was hot and sweaty” episode and took a while to calm enough to eat dinner. When Stefan got home Ryan told him about the balloons and found the one he had left. Somehow he popped it giving us all a fright… but then he laughed and laughed and laughed.

Usually he has night meds and storytime around 6pm but he was still eating toast and nuggets at 6.40pm and when he is happily eating we don’t stop him.

Storytime was Walter the farting dog again and finally tuck in! Another very long and busy day!

2018: Tuesday 15th May

Ryan woke up quite happy this morning (even though it was another night of broken sleep). We did a few rounds of breakfast and then went back to bed to listen to the rain. I almost thought Ryan had gone back to sleep but I was wrong and he was up and bouncing again in no time. While the kittens played around us (Jasper with a straw, Havoc wanted the books and Dipper just lay around watching us) we did reading. ‘My balloon goes up’, ‘Paw Patrol phonics book 2 Help the pets’ and a new Alphatales book ‘Rosie Rabbit’s Radish’.

Our Fire theme activity was coloured foam made in the blender. Add water, dishwash liquid, cornflour, food colouring and blend. Then I gave Ryan a mini water gun to squirt the foam off the Playdough fire station.

This had Ryan occupied for over an hour, with lots of imaginative play, loud voices, and laughing. He had a fire dog, fireman and Sherriff Callie. I added a silicone bottle brush and he scrubbed and cleaned… and put all the toys in the jug and spun them “like they are in a washing machine Mum!!!” He got foamy bubbles all over himself, the bench and the floor but it was an easy clean up so all good 🙂

Midday was his Riding for the Disabled session and I took an “extra pair of hands” since my back is still sore after yesterday’s meltdown. Ryan resisted getting on the horse and played with the washing machine, filled the kitchen sink and emptied it a few times (checking out the pipes under the sink) and even went for a run outside in an empty paddock. Eventually he came in when he was told Reiko (the horse) had hidden the kitchen sink plug and Ryan needed to sit on Reiko to find it 😉 It took 4 people to get him on Reiko and walking but once he was moving he was fine. His coach kept him answering questions, throwing bean bags and they even got him to turn around and ride a bit facing backwards! They let him trot a little bit which made him giggle and after a 20 minute ride he was done. Unfortunately he went back to the washing machine and kitchen and was touching taps and plugs and not listening to anyone. We tried “first and then” but he had switched off and was throwing himself on the floor screaming as other kids were arriving. David hoisted him over his shoulder and took him to the car. I was thankful for my strong teenage son who saved my back and ears! New meds start next week so hopefully some of this behaviour is calmed, as nothing we have tried so far has worked and he is just getting bigger and stronger.

The afternoon was spent unpacking the grocery delivery, doing loads of washing and a big bubble bath with lavender scented bubble bath. We read more books, watched some Lego City (with fire, police and ambulance Lego characters) and played with the pets. Ryan collected dirty washing from his brothers rooms, a job he loves and thanks them when they have some for him lol.

Stefan read both the Walter the farting dog books at bedtime, so gross but totally Ryan’s sense of humour at the moment 🙂 I went in to sing his lullaby and when I leant down to kiss his forehead he moved up and our foreheads collided. I said “OW!” (his head is like concrete!) and he laughed and laughed and laughed! So much for a nice calm tuck in lol.

2018: Monday 14th May

Early, when it was just daylight, we had to go out to drop Stefan’s car off at the panel beater and Ryan was okay once we explained they are fixing the broken light. He asked me a number of times during the morning “Mum, is the man fixing dad’s car? Can I have a ride when it’s fixed? Can we go and pick it up?” as he was processing this.

This week our theme is Fire… and that includes fire safety, a fire station visit (or not as you’ll read further down), Ryan’s favourite Paw Patrol character Marshall, … and dragons (because they breathe fire… yes, I was stretching for books to read so these made the pile lol).

Today’s books were a new phonics book set – Paw Patrol phonics Book 1 Short a. Our fun book was ‘Bertie – The Great Jellyland Bushfire’ set in Australia. (thanks Mel, he enjoyed this one!). And Ryan had a try at scratch art with a Paw Patrol picture. We have never used these before and it was really cool seeing the colours appear. It’s essentially like a giant scratchy ticket and the picture is the prize. Ryan also drew a box (first time I’ve seen him do that!) and called it a computer!

And here’s where our day went belly-up. I signed Ryan and I up to go on a visit to the fire station with our local homeschool group. I knew it would be a challenge but figured we could go and leave as soon as he was needing to. I thought about taking a “second pair of hands” but thought we would be fine. We talked about going to see the fire trucks after lunch and Ryan knew where we were going because it’s next door to the recycling centre.

We still had a few hours to fill in so I put a couple of songs on YouTube by The Workers – Fire Fire Fire and Fireman Big and Strong.

I stuffed up. I’m sure sleep deprivation has a lot to do with it but I wasn’t thinking. Ryan started screaming, throwing the touchpad and getting very aggressive. I couldn’t figure it out but then he said “why did I get hurt at school?” and I realised that I loaded those songs on his touchpad when they did a fire unit at school and he seemed to love them then. But obviously I had triggered something.

I tried to distract him by talking about going to see the fire trucks and the hoses but he said he didn’t want to go. We did some more washing and I decided we should go for a drive and see the fire station. Again rookie mistake. We got there, walked down the footpath, saw the washing line they must use for their uniforms (which Ryan was interested in) but then he spotted train barrier arms about a block away.

I tried to distract him by heading to the fire station but he threw himself on the ground screaming and we were quite a way from the car. Because he was fighting me to run to the barrier arms, across roads, I had to try and stop him, but boy, is he strong! He is too heavy for me to pick up so we eventually got back to the car half walking, half me attempting to carry him and in the process I pulled a muscle in my lower back. I could have just sat and held him but the screaming and kicking made me worry it looked like a kidnapping (only half kidding!)

At home the meltdown continued and I ended up locking all the doors to each room so Ryan could only use the hallway and his room, shut myself in my room crying, and listened to him screaming and throwing shoes, toys, books, anything not nailed down.

A friend, and fellow Mum to a son with ASD, happened to message at that exact moment (Thank you God!) asking if she could bring me a coffee and Ryan some nuggets (having no knowledge about what was going down). My first response was to say “no thanks”, as I am not good at accepting help/gifts but she sounded like she needed company too so I said “yes please”, and briefly explained Ryan was in meltdown mode so she was prepared. I dried my tears, put Ryan in a bubble bath and quickly cleared the floors.

We spent a lovely hour chatting, watching our boys play with washing machines and the kittens and it was exactly the reset we needed.

After they left Ryan went outside to feed Clover… and ended up with his head in the cage asking why she ran away when he patted her lol. He fed her some silverbeet and yellow flowers from the lawn.

We had a few more “moments” but the rest of the day went fairly calmly and I even got to cook a yummy homemade Spaghetti Bolognese for dinner from scratch. It’s not often we have meals that take a while to make or need boiling pots/frypans as Ryan can be very unpredictable at the end of the day. I prepped everything earlier and had the sauce simmering but had to lock the kitchen everytime I left the room. Alex helped supervise and we all had a delicious dinner… except Ryan who had more nuggets even after asking for some noodles lol. Ah well, I tried to get him to eat something new! I was probably lucky I didn’t wear it considering how the day had been 😉

2018: Sunday 13th May

Ryan woke me nice and early, after multiple times during the night. We are starting to forget what a full night’s sleep is. On the upside Ryan was a lot calmer today and not as “busy” as yesterday. On the downside something has upset his tummy and he spent a lot of time back and forth to the toilet, plus insisted on 2 baths.

Ryan played with the Geomag magnet set, and pulled out his soft toys and puppets.

While I was tidying I found the plastic scales and Ryan took them to the kitchen to weigh his painted food rocks. He played with the Minion Operation game, went outside to feed Clover carrots, and I set up a water play tub with blue coloured fish shaped ice cubes.

We watched The Polar Express and Paddington 2 a number of times and played with the kittens. Of course, we did multiple loads of washing which Ryan helped with and he helped me tidy up the Space themed books and things so we can start a new theme tomorrow 🙂

Oh yeah, and it’s Mother’s Day here in New Zealand… but it was business as usual at our place. Stefan was at work and the teenagers slept till afternoon and attached themselves to screens in their rooms the rest of the day. Our favourite fish and chip shop did cook our dinner so that was nice 🙂

Stefan got an earful from Ryan at storytime because he tried to read Walter the farting dog goes on a cruise… The current favourite is Walter the farting dog at the yard sale… and that was the ONLY Walter book allowed lol.

2018: Saturday 12th May

Ryan slept approx 2 hours last night and has been talking non-stop ever since.

Stefan took him out to walk at Gordon’s Bush and Ryan was even louder and busier when they got back!

After lunch we had over 2 hours of repeating the same questions. Talk about patience testing!!!

Dipper is our cuddly kitten and loves curling up on any bed. Today he was super tolerant as Ryan came to talk to him (and laugh at him cleaning himself).

The repeating talking and constant bouncing and moving continued for the rest of the day, with us all taking turns to shut ourselves away with headphones on to get some peace.

This was day 3 off one of his ADHD meds and I dare say he will go back on it, after I report back to the paediatrician on how he responded. And this wasn’t even him off all meds as he is on another ADHD med, an epilepsy med and a sleep aid.

And at 7.18pm the talking stopped and he is asleep!! Off to bed for me too soon, in case of another up and down night.