547 + 443 Weeks

The excitement of Christmas has come and gone, and I am relieved!  There is always a buildup of excitement with the kids and no matter how calm we make Christmas, there are inevitable troubles due to change of routine and overwhelm etc.  We had a chill Christmas day, which was lovely.  Jeffrey and I woke up before the kids!  Arley woke up at 7:20 and then waited a while before he woke up Carmie.  They opened stockings on our bed and then went out to presents under the tree.  They both did well, with their main presents being Apple Watches (thanks to our therapists and NDIS).  Carmie was totally stoked by the watch, Arley not so much.  I think he was in such a funk because present opening was over and he couldn't get excited.  It was a little cold and rainy on Christmas Day, and Arley wanted to have a family swim, but no one really wanted to go in, so he started crying.  He was quite upset.  Carmie and I ended up swimming with him, and having lots of fun too, so that improved his mood.  Later on towards the evening he put on his new Apple Watch and realised how cool it is, and has loved it ever since.

The weather has been really bad this week, rainy and even a little chilly (Christmas in the subtropics is not supposed to be chilly!), so we have spent a lot of time playing games together.  The kids' favourite new game is Cards Against Humanity, family edition.  I have to say, it is hilarious.  So, we've played that a lot, along with a few others.  We haven't actually left the house except to go on a walk around the lakes!  We have collected lake water and rainwater in soil to look at through the microscope. The kids have played XBox and played with their giant bubble kit.  And there has been a fair amount of bickering between the two.  Carmie is having a hard time dealing with Arley who in turn is having a hard time adjusting to being off his meds.  He needs to be stimulated at all times or else all hell breaks loose.  Poor Arley had a meltdown last night, starting at the dinner table over an incident between him and his dad, and it got out of hand fast.  It was a bad one.  It's nice to have a break from all of our therapies over this time, but on the other hand, it would be really great to get some help and advice!

Tomorrow is New Years Eve and the forecast is for rain.  Keep your fingers crossed for us!

545+546+441+442 Weeks

I haven’t posted in two weeks because I’ve been really busy.  My mum flew in from NSW to surprise the kids on the 13th.  They had no idea, they didn’t even know the borders were open.  Jeff went to pick her up in the evening under the ruse of going to the liquor store, and then he told the kids there was a human-sized toad in the front yard.  They cautiously went out to see the toad and found Lolo instead.  They were so happy and surprised, it was great.  It was lovely having my mother here.  She was here for a week, and we didn’t do much but hang out, play games, swim in the pool, go to the mall, and one windy day we went to the beach and out for ice cream.  Lolo left on Monday and it was really sad.  It won’t be as long until we see her again next time though.

Things have been pretty good, with a few downs.  The kids and I finished our family therapy program.  We still have more work to do with the therapist, but it will be one on one with Arley for 15 minutes and then me and Jeffrey for the rest of each session.  Arley still needs a lot of help.  He has a baseline of anger and discontent running through him and we need to address it.  The therapist thinks it’s because he is so smart and he’s not stimulated enough.  He longs to be on his screens all the time, otherwise within a few minutes he is causing mischief.  Anyway, as a reward for finishing our family therapy program, we took the kids to this blow-up aqua park on a river. They were SO excited to go, they had been working hard towards it for weeks.  We got there, and the place was just huge, and Arley was too impatient to wait for Jeffrey and I to get our life vests on (all visitors had to wear life vests), so we told the kids to go in together and we would find them.  Jeffrey and I got our vests on and entered the aqua park.  It was so difficult to navigate!  It was all made up of different kind of connected floating rafts and towers and slides etc.  We were searching for the kids for a good 20 minutes before we found Carmie, who didn’t know where Arley was.  That’s when my panic set it.  We kept Carmie with us and continued to search but still couldn't find him.  So Jeff and Carmie stayed in the river while I went to shore and headed back to our table.  He wasn’t there either, so I found a life guard to help me search.  She finally saw a little head poking out from this square of floaties, and it was Arley, trapped and unable to climb back up. He was fine, but he had been stuck there the whole time!  They radioed another life guard to help him out, and I waded out to him.  I was fully expecting him to be seething with rage, but he seemed ok.  He kept telling me he was fine, but then as we searched for Carmie and Jeff, his anger and fear started bubbling over, and I had to get him out and take him to the cafe.  He refused to get back into the water and we both missed our session.  Carmie and Jeff had a blast, and remarkably Arley sat with me the whole time without demanding to leave or even using my phone to keep him occupied, which is huge progress.  Super stressful day though, and a definite disaster of a reward!

This past week we had a bit of drama finding a Christmas tree.  A lot of drama actually.  We waited until my mum was here so she could help us decorate, but when we tried to get a tree, everywhere was sold out.  Everywhere!  We then called around to try to find an artificial tree - sold out too!  So on Friday Mum and I got the kids in the car and drove around everywhere we could think of to get a tree, real or artificial.  Three hours later we still had no luck and headed home.  This is when Carmie suddenly vomited  in the car at a traffic light, half in the car and half out the door.  Fun times!  Our Christmas tree problem was solved on Saturday when Jeff put on his work gear, got his pole saw and drove to the pine forest and chopped down a tree for us!  That day he decorated outside with lights and that night we decorated the tree.

The kids have had a couple of sessions with their mentors (one which ended in a huge fight between the kids) and a couple of sessions with their support worker Jonty.  We also met the kids' friend Chayse at Rush Adventureland and Carmie got ganged up on in the ball pit by eight boys throwing exercise balls at her.  She stood her ground, but was very angry and upset, she was shaking with emotion. We also got our hair cut this week, which is good because we all needed it in this heat.  Arley is still fully off his meds, and he is a little cranky, particularly this week.  He has a very hard time filling his time with anything, and he lets us all know.  We are hoping to work on this in therapy, but therapy won’t start up again until the end of January. We’ll get there though.

The kids are really excited about Christmas.  We are having a very quiet one, staying home.  We’re not big on crowds so going out isn’t enticing, and the kids are SO hard to feed that we can’t even organise a special Christmas lunch or dinner.  So we will be doing presents in the morning, ice cream in the afternoon, and hopefully playing new games and swimming in the pool.

I’m sure I’ve missed a lot from the last two weeks.  Right now the kids are having a night swim in the pool together, which is the first time they’ve played together in ages, so I’m pretty happy about that.  It’s almost their bed time, so I’ll have to get them out, bugger!

At Rush Adventureland

At the aqua park before the drama

At the beach with Lolo

The stolen Christmas tree

New hair cuts

This is the face Arley always gives me when I try to take a photo, and then I have to bribe him for a smile.

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!