544 + 440 Weeks

It has been a week of real ups and downs.  Carmie had horrible sleep every night this past week, except for last night when she finally slept.  She has been waking up at about 1am and then staying awake for 2-4 hours.  As you can imagine, she has been feeling pretty awful.  At tennis on Friday she was barely moving on the court and I had to have her sit and have a break.  She is yet to have a good lesson.  Luckily Arley has been picking up the slack and kicking butt at the lessons, so that is a good thing!

We spent the rainy weekend at home, and then on Monday Arley’s mentor came over for a two hour session.  Carmie had a zoom therapy session with her new psychologist.  After that I took the kids to Sea Life Aquarium, which was awesome.  The kids’ new support worker Jonty works there, and he gave us passes so the kids could get photos with a seal.  The aquarium was awesome, definitely a must see thing to do here.  After Sea Life Carmie’s mentor came over to do a session with her, so it was a pretty full-on day.

On Tuesday morning Jonty came over to take the kids for the first time.  It was raining on and off, so they stayed home and played Xbox and swam in the pool when they could. Then Carmie kicked his butt at Connect 4.  Jonty seems like a good guy and I think will work well with the kids.  It was really nice to have two hours when I know they were having fun and playing together and learning to be social, and I didn’t have to be involved!

Yesterday we had our family therapy first thing in the morning.  It went ok - Arley was a little painful at the beginning, and Carmie was also a little mute, but soon opened up.  Afterward we were supposed to go to the beach with Lexi but Carmie was too tired and overwrought from a week of bad sleep.  Arley was a little off all day.  We have taken him off his Prozac for the first time since he was four.  He has been very depressed lately and saying some awfully sad things to me, so I emailed his paed who said to take him off.  The odd thing is that the paed didn’t say to wean him, so I didn’t. I took him off about six days ago I think. As the week has gone on, Arley has been more and more difficult, depressed, angry etc.  It culminated in a huge violent meltdown last night that was really scary for all of us.  He was also coming down off Ritalin, and he hadn’t eaten lunch or afternoon tea because the Ritalin makes him not hungry.  It was a really bad meltdown, and we are all kind of hung over from it today.  I decided to take Arley off the Ritalin too, so today is his first fully unmedicated day in four years.  I am keeping a close eye, but earlier he told me he feels happier and more in control.  So, keep your fingers crossed!

This week we have had a couple of night time ‘pool parties’ as Arley calls them.  Pretty much an after dinner night time swim.  I’ve been in once with him and Jeffrey, and twice just the two of them have been in.  Carmie hasn’t wanted to, but it has been really great, because Jeffrey and Arley don’t connect that much just the two of them.  I’ve also been taking Arley on toad hunts - one night he walked for almost an hour and didn’t even realise.  Usually after 10 minutes of walking he tells me he is bored and hot and asks to go home. He loves his toads!

This morning the kids and I had a lovely swim in the pool together, and then played a board game, had lunch (Arley actually ate!), and then the kids played computer games together.  Pretty chill.  Hopefully this is a good sign going forward!  We have a day out planned for tomorrow after tennis, so send good vibes for Carmie to sleep!

Arley has a thing about swimming in his wetsuit, despite the Queensland heat!

543 + 439 Weeks

So, it has been raining for most of the week, and I have no photos, only two of the kids doing an art project (which they loved!).  I have just been told that we are in for the rainiest summer in ten years too :(.  This is good for the frogs and toads (which we are still hunting at night time), but not so good for us!

We didn't do much this week, obviously.  The kids and I have been playing games and listening to a podcast.  They both have had their mentors come over, and we also had a great family therapy session, which is a breath of fresh air because they have been disastrous lately. This afternoon we had a meet and greet with a guy called Jonty who is going to be a support worker for the kids, basically taking the kids a couple of mornings a week for 2-3 hours.  He is really nice and seems lots of fun, and Carmie kicked his butt at Connect 4, and he asked Arley to teach him Roblox, so the kids are happy.  And I will get a few hours each week to myself which will be AMAZING!

Yesterday we had a disaster of a morning.  It was pouring rain, but we had organised to meet the kids' friend Chayse and his mum at a place called Rush Adventureland.  We got there and couldn't find a parking spot, and drove round and round for ages.  Then I didn't realise they only do homeschool discounts on Fridays and I couldn't bring myself to pay double the cost (it would have been $90 for a few hours of fun!).  Arley was very upset so of course caused a bit of trouble.  I bought the kids a drink so I could sit and chat with Chayse's mum.  That didn't last long, so we ran back to the car in the pouring rain and were totally soaked.  I decided to drive 15 minutes through the downpour to the toyshop to buy the kids some strategy games they have been wanting (that's our version of homeschooling), and we had to run through the rain again.  As soon as we got inside the toy store Arley said he needed to pee.  They wouldn't let him use their bathroom.  They said the closest one was across the road and down the street.  I told them if I was leaving in the pouring rain I wouldn't be coming back to shop.  They still wouldn't let him use it!  So we ran back out to the car and drove home wet and miserable!

Tomorrow we have tennis at 7:30 and then a beach morning planned, so fingers crossed that outing goes a little better!

542 + 438 Weeks

I only have one photo from this week!  This is so not like me.  I think it is because we have mostly been inside because of the rain.  So much rain!  And so much more to come.  We are being overrun by cane toads.  Actually cane toadlets, hundreds of them.  Last night Arley and I went out with a flashlight and found two large cane toads in our yard.  During the day we have seen at least a hundred babies.  They are poisonous to Bella so we will have to do something about them.  In the meantime, Arley is loving his 'toad hunts'.

We have had a few stressful days this week.  The kids' grand dad Pop bought them a new computer each for Christmas (early, but we were desperate!), and Arley was SO excited, but then we found out our modem also wasn't working properly, so there has been a lot of drama.  I spent a few hours on to Telstra dealing with it to no avail, so last night I emailed the CEO of Telstra, and low and behold, I got a call today and they are sending out a new modem which should arrive tomorrow.  This will help us out so much.  The kids' faulty computers have been the source of a whole lot of stress for the past nine months or so, and now I feel a huge weight lifted, and the kids are SO happy.  And so am I, so thanks Pop :)

Yesterday I took the kids to a rock climbing centre.  They were so excited to go.  I should have vetted it first, because it was way too hard and stressful for Arley.  He had a mini meltdown there, but the owner was very good about it.  Carmie liked it a lot (she loves rock climbing and bouldering!), but we couldn't stay long.  When we were leaving, I told the owner she would be back with her dad, and Arley turned to him and said, "And I'm never coming back again."  Nothing like autistic honesty! :(

The kids started their tennis lessons on Friday of last week.  It was very early and I received quite a bit of groaning and complaining from Arley (Carmie was fine, of course!), but we made it there on time, and the kids loved it.  They both were surprised that it was over so soon, so we are switching from half hour to 45 minute lessons from now on.  Tennis is going to be rained out tomorrow, but I'm a lot less scared of the early hour now.

The kids both had their mentor sessions, and they went really well.  Arley was a little unfocused and hard to engage, but he was really chatty.  We are finding his new dose of Ritalin makes him so talkative, and very honest too.  Carmie had her session today and she built a lego robot.  We had our family therapy on Wednesday morning and it was a disaster...so stressful.  Carmie went mute, and Arley kept sighing and saying how bored he was, and talking over Carmie because of Carmie's trouble speaking.  Then he started yelling at her because of her bare feet.  Then Carmie started crying.  Arley refused to sit in front of the camera (it was a zoom session).  You get the picture...so fun!  Not!

We have a week of rain ahead of us, so wish us luck with our cane toad infestation! 

A cane toadlet as big as my thumbnail

541 + 437 Weeks

We didn't get up to too much this week.  We had a lovely-ish beach day with Nicky, Lexi and Felix on Tuesday.  It was beautiful there, and really great until we had a bit of melted and spilt ice-cream drama, Arley started yelling at an already upset Carmie and Carmie had a melt down and ran away.  Yep, I couldn't find her, and I had a very harrowing five to ten minutes.  Deep down I knew she was fine, but still I couldn't stop the blind panic.  A woman who works at the Surf Club started helping me search, and she went to make an announcement in the club when she found Carmie right outside it.  Carmie had walked down to the car, discovered it locked and then was just hanging out until she got calm.  Which is fine, except that I didn't know where she was!  Ugh, I hate that feeling.  I got a horrible stress headache which lasted most of the afternoon.

Yesterday we had plans to meet up with Nicky again at the rock climbing centre, but Carmie didn't sleep well the night before, so we had to cancel.  Poor Carms didn't sleep well last night either.  She was awake from midnight to 4am.  Her new paed has her on some medicine which was originally knocking her out and making her groggy, but for the last three nights it hasn't been working.  I think she has the doctors a little stumped.

Jeffrey had today off work, so we took the kids to the Buderim waterfall, which is only 10 minutes from our house.  It was lovely down there, and good to get into nature.  Arley can only last so long in environments like that, so we explored a little and then came back home.  It was pretty noisy there because of the waterfall, and it was getting hot, two things which set Arley off.

Both kids had their mentors come this week and that went well.  Arley's paediatrician has put him on a higher dose of Ritalin, and today was his second day.  He is very very chatty on it!  And lately Arley has been asking to go out in the mornings, because he needs to 'bust time'.  I don't let him on screens before 1pm, so he has discovered that going out makes time go faster.  This is a big win for us.

I have found an equine centre for the kids.  It has a wait list though, so she is going to try to get them in over the school holidays and then slot them in next year.  I also have signed us up for tennis lessons again, at 7:30 on Friday monrings.  This is SO early for us!  Arley was pretty mad.  Our first lesson is tomorrow.  Send me positive vibes, somehow I have to get the kids out the door by 7:10am.  Oh my god, what have I done!

It's Movember...

540 + 436 Weeks

It is so hot and muggy right now!  The kids went for a swim this morning while I splashed around a bit.  The pool thermometer says 28 degrees, but it doesn't feel that warm to me.  I know thunderstorms are coming becauase Bella is hiding under my desk right now as I type.

The weather has been pretty rainy this week, so we didn't get out much.  We made a spontaneous trip to Caloundra on Monday in between rain showers.  Jeff had gone there to take photos, and called me to bring the kids down because it ws so beuautiful there.  We did a bit of swimming and then I took the kids out for ice cream before it started pouring again.

The kids and I all got our hair cut too, which was so necessary in this heat!  They used to get donuts after hair cuts, but now they have decided their treat will be bubble tea.  Arley needs a treat afterwards because he hates getting his hair cut so much.  Our hair dresser kindly makes sure her salon is empty for us because Arley gets very cross.  Luckily she is very understanding!

Both kids had their Launchpod sessions with their mentors this week.  They went really well.  I feel like we have many advantages for the kids up here that we never had in Ulladulla.  There are a few other services that we plan to try next year too, and I am trying to line up tennis and horse riding for the near future.

I had a solo chat with our family therapy psychologist this week.  She gave me some good ideas for us to work on.  She thinks both kids are incredibly smart, and that Arley's troubles are from the way his autism is presenting at the moment.  She said he is obviously a very sweet and engaging little guy.  This is really nice to hear, because she often sees a different side of him.  She has also lined up a different therapist who works with girls on the spectrum to work with Carmie, just so that Carmie has someone to chat to.  Arley is in a bit of a mode of controlling Carmie, and there's not much we can do about it but actively ignore it and redirect, so it will be good for Carmie to have someone to talk to.  That will be starting in a week and a half.

It's been a pretty chill week.  Hoping the next week will be just as smooth!

538 + 434 Weeks & 539 + 560 Weeks

So, I guess I forgot to actually post this last week!  Here is post #1, followed by post #2...

Time is definitely getting faster with every week.  Jeffrey had a four day weekend this week, so we had a lot of family time.  It was hot, so we went in the pool, played darts on the patio, had some drinks, watched a movie with the kids…I think this is how our summer weekends are going to play out.  Pretty chill.

The kids have had an up and down week.  Arley is on his third trial of Ritalin.  He’s not eating much, which is a bit of a worry, and he seems a little temperamental.  This also could be because his computer is in the shop getting worked on, so he is at a bit of a loss of what to do with himself.  He is desperate to learn coding, so we have been doing it together, but I only have so much time to give to him, so he has been getting upset.  He thinks he will fail without me.  I can’t seem to get it through his head that I am no computer whiz!

Carmie had a week of terrible insomnia.  She slept badly five nights out of six, and then the night before last she fell asleep at 5am and slept to 8am.  Three hours sleep.  She was an absolute mess.  Luckily she crashed last night and finally slept.  She had her first Launchpod session today with a woman called Holly, who will be her new mentor.  Carmie loved it.  And it gave me time to do coding with Arley.

We took the kids to a new park nearby on Tuesday. It’s a pretty cool park, and they loved it.  I’m not sure how much we’ll be able to go there while the weather is hot.  It’s getting hotter and hotter.  When I get up in the morning I am straight into shorts and t-shirt, feeling the heat.  Summer might be a killer!

Arley had a play date with his new friend Chase on Wednesday.  We left Carmie at home because she was so unwell due to her insomnia.  Arley and Chase had a good play, but it was so short.  We went to the neighbourhood park, and 45 minutes in, Arley had to pee, but there were no toilets there, so we had to leave.  The good news is the boys got along very well and I can see them becoming good friends.

I don’t have much more to report.  We are waiting on Carmie’s NDIS funds to come through so we can book the kids into more therapies like equine therapy.  Carmie really misses riding.  Arley is happier staying home, but I won’t let him :)

Now for post #2!

It has been a good week, with a few ups and downs, but we've handled it well.  Arley's computer has been in the shop getting fixed for almost two weeks, so things have been more difficult than usual, but it came back today and it is working and he is happier!  I am too, because he had taken over my computer, which is why I forgot to post last week...

We had a successful beach day with the kids' friends.  Arley was worried to take his shoes off at first, but as soon as he got there and saw Carmie and Lexi running down to the water, he took off, flinging his shoes over his shoulder.  He swam in the ocean for a good hour, which is such a relief!  Beach days are back!  This is such good news.  Of course since then, the weather cooled right down so we haven't been back.

Halloween was on Sunday and the kids got dressed up.  We were running a little late so we didn't have as much time to put into costumes as we normally do.  The kids had fun anyway, and got lots of loot.  Afterwards we went out to dinner to a pizza/pasta place (gluten free menu!), and it was good, except Jeff got a bit cross at Arley because Arley wouldn't stop eating his candy before dinner.

I took the kids back to the new park we found.  We had a good play, and Carmie and I also played some baseball.  Today we had a play date with the kids' new friend Chase, at our neighbourhood park.  The kids had a really good time, and I'm so glad Arley has a friend nearby.

Family therapy this week was a disaster.  Arley was stressing out and wouldn't participate, and Carmie was mad at me so was being difficult.  The kids get a break next week while I meet with the therapist alone, which is good because I think we have a lot to talk about!

Some good news is that Carmie's NDIS funding just came through yesterday, which means we can start our equine therapy.  Carmie had Launchpod today too, and she loved it.  We are so lucky to have this support.  Can't wait to get the kids back on horses!