730, 731 + 626, 627 Weeks

It has been a rather hectic week, what with Jeffrey coming home from the US and the kids having their birthday.  I spent Monday getting ready for their birthday, wrapping presents, getting the house tidied up, did some work, and it feels like I never stopped and suddenly it is Friday afternoon.  Jeff arrived home on Tuesday morning.  It was very good to see him again.  It was a long three weeks, for both of us, I think!  He is still quite jet lagged, getting tired early and waking up even earlier.  Luckily he is not starting back to work until Monday, so he has some recovery days.

It was the kids' birthday on Wednesday.  They turned 14 and 12.  I don't quite know how that has happened, but suddenly they are both big kids!  They got to do exactly what they wanted on their birthday, which meant that they opened presents first thing in the morning, then Lolo and Dida came over for morning tea / birthday cake, and then Carmie went off to her D&D group, and Arley stayed home and played his computer.  On Thursday morning Arley had a couple of friends over for his birthday.  It was supposed to be four kids, but two kids ended up not making it because they thought they were going to be back from camping, but they weren't.  Arley and his two mates still had a really good time.  We set up the fire pit for them so they could build a fire and roast marshmallows.  They played with balloons and darts (always a fun combo, LOL), and then Xbox, meanwhile eating a whole lot of candy and junk food.  And Carmie avoided them at all costs.  Haha.

So, Jeff had a good time in the US, but he is very happy to be home.  The kids are very happy he is home too.  Arley was asking about him several times a day for the last week.  Arley has had a good couple of weeks.  He has started seeing a psychologist, which is great - we really like him.  He has two new foods, and he now helps me with one of his meals that I prepare him.  Carmie has been pretty good, except that she has been quite nauseous again over the past few days.  She had an appointment with her gastroenterologist.  He thinks she might have gastroparesis, which is delayed emptying of the stomach, and has given her a med that we are hoping helps.  It seemed to be working at first, but not so great the past few days.  He said to double the dose if her nausea isn't better within two weeks, and I think we are about at that point.  If this doesn't work, she has to have a gastric emptying scan done, and then we move on to different meds.  So keep your fingers crossed!

They clearly did not like our singing!

728, 729 + 624, 625 Weeks

So, Jeffrey left for the US nine days ago.  He will be back on July 1st, so we still have quite a ways to go.  The day he left I got really sad, had a bit of a cry, told the kids we were having the day off, and I spent the whole afternoon binge-watching my current tv show.  I have not done that in years.  Years and years!  The next day I got up full of energy, so I think it was exactly what I needed.  It has been rather peaceful around here.  I'd have to say, day to day parenting has been easier as a solo parent - but, life is not nearly as much fun.  The kids have only me telling them what to do, which I think they quite like.  Haha.  I've been doing Jeff's chores like dog poop clean up, and taking out the rubbish, and I've taken to not cooking myself dinner, because why even bother? LOL.  I feed the kids separately.  I've been painting more too, trying to fill up my time.  But it's hard at night time, with no one to chat with and laugh with, and going to bed is rather a sad event.  I am looking forward to Jeffrey's return.  I just hope the kids stay this cooperative!

Before Jeff left, we took the kids to the mall one day to ride the paddle boats and get some food.  It was fun but stressful, a good reminder of why we should get out more with them, but also a reminder of why we don't!  Ha ha.

Life has been going on as usual.  The kids have a new reward system where they are earning stars each day, and they can cash them in for different things.  They got me on Saturday by both cashing in stars to go to McDonalds for dinner.  While I was cringing because they were eating such gross food for dinner, it was also nice to be out, and we had fun.  Carmie has been feeling just ok - some good days and some bad.  She has made it to most of her groups, as well as physio, and also managed to go rock climbing with Clint again this week.  I had to get her blood drawn again last week, in lieu of her appointment with her gastroenterologist next week.  Hopefully they can figure out why she is always nauseous.  Arley has had his friends over a couple of times.  Not Luca, because they have had a falling out (it involved Luca being aggressive, Arley punching him -!!- and Luca smashing Arley's phone, shattering his screen.  By the way, Luca is about a foot taller than Arley, and almost double his weight). Luca is currently not welcome in our house!  Other than that, Arley has been doing well.  He had his first psychology session with his new psychologist, a man named Jason.  I have been searching for a male psych for Arley for years, so I am very happy to have found one, and even better, Arley likes him.  They had a good session on Tuesday, and Arley will be seeing him fortnightly from now on.

I don't have much else to add.  I'm only posting every two weeks these days, because not much changes around here anymore!

Arley in heaven, at McDonalds, sitting alone with his iPad and headphones :)

726, 727 + 622, 623 Weeks

Well, it has been a full-on couple of weeks, with some big wins, and a totally crap day yesterday that took the cake of crap days.  But, the wins have been good, starting with Arley going off to a birthday party on his own, when he only knew the kid whose birthday it was.  The boy is called Bronson, and he is a friend of Luca, the boy down the road.  Luca introduced them, and now Arley and Bronson play together online, and have hung out a couple of times with Luca.  Jeff and I took Arley to the party and then went to a nearby cafe for brunch so we could be close by if Arley needed us.  The party was two hours long, and Arley lasted an hour and forty-five minutes before he messaged me to pick him up.  When we got there, I found Arley sitting among the kids and parents, strumming a toy guitar and yacking it up with the best of them.  He fit right in, even though it was a pool party and we didn't know.  Arley had swum in his shorts and socks, and had a blast.  I'm sure the other kids didn't even know he is homeschooled, let alone autistic.  It was such a pleasant surprise to see him right in the mix, socialising with the best of them!

Last weekend Arley found out that Bronson was just down the road at Luca's house, and he asked if they could come over.  So Bronson and Luca came over, with another neighbourhood kid, a girl called Piper who goes to highschool with Luca.  They stayed and played with Arley for ages, then Arley went off to Luca's house for an hour or so, before Bronson and Piper came back to ours, without Luca.  Then Bronson was picked up, but Piper stayed for another hour playing alone with Arley.  Since then, Luca and Piper have been over two more times, and then yesterday they all wanted to hang out here again, but I said no, not after the day I had had.  So, unbelievably, Arley went and hung out with them at the park for an hour.  You have no idea how huge that is.  Arley hates going outside, hates the park, and hates not having an actual activity to do (like play Xbox).  I couldn't believe it.  Huge win!

I have finally found a male psychologist for Arley, and had my first meeting with him on Tuesday.  After chatting for almost an hour, the pscyh told me that Arley has many layers to him that we have to delve into, but that his newfound social life is the key to everything - it will help him mature faster than anything, help him learn social norms, learn about the opposite sex, learn self-confidence, and boost his self esteem.  We have to foster these friendships as much as possible.  And Arley is going to start seeing this psychologist fortnightly, and I couldn't be happier about it.

Carmie had a big win too.  Clint took the kids rock climbing at an indoor gym, and Carmie got her climbing mojo back!  She used to love rock climbing and bouldering, but 18 months ago she had a huge panic attack when I took her, and she hadn't gone back since.  Clint said she smashed it, and she enjoyed it so much that she is going to go weekly (fortnightly with Clint, and then with Jeffrey every other week).  Clint took her bouldering this week too.  It's going to be the best thing for her back, and I'm so glad we found something that will help and that she loves!  She has also been doing her phsyio twice a week with her physio support worker, but she missed her actual physio session yesterday, as well as D&D, due to severe nausea.

Carmie's physio is also a nutritionist and women's health specialist, and she has been trying to help with Carmie's nausea and feeling faint.  After keeping a food/health diary, we have come to the conclusion that Carmie has dizziness and nausea due to low blood pressure.  This gives us something to work with, so I'm hoping we can make some easy changes to Carmie's eating and drinking patterns that will help.

So, yesterday was a day from hell.  Arley woke up on fire, so dysregulated and angry.  He was really causing us so much stress, including himself.  I warned our support worker who took the kids to see Clint at Chambers Island, and I also warned Clint.  When the kids were getting out of the car, Arley put his hands on Carmie's shoulders, and she turned her head and shrugged to get his hands off her - he thought she bit him (that's him in fight mode due to dysregulation), and he hit her in the head (ear) from behind.  This set off a string of phone calls between the kids and I, and I felt completely helpless.  No one can help Arley with regulation like I can, and it was very stressful to have both kids melting down (Carmie even bolted and ran away - she was safe, but still!) and not being there to help.  Clint ended up driving Carmie home, and our support worker took Arley to Caloundra for his time with Sprinkle and his buddy Liam.  Carmie was a mess when she got home, we couldn't go to physio, then the education department called and said they couldn't register us for next year for homeschooling as my education plans for the next year don't show enough change.  The woman was questioning our homeschooling methods, and I broke down and cried to her for half an hour!  OMG.  Turns out she is a teacher, and after hearing how hard I have it, she passed our registration (yay!) and has put the kids into a different homeschool program for diverse learners, so going forward it will be much easier.  So, that is a win!  But then it was time for D&D, so I drove Carmie there, only for her to tell me she was too nauseous to get out of the car, and could we just go home.  The day at least ended on a good note, with Arley going off to the park to play, and I got some peace and quiet for a cup of tea and a rest.

Jeffrey is leaving for his trip to the US on Tuesday of next week.  He will be gone for three weeks, and I am NOT looking forward to it!!

This is a photo of Arley rock climbing, proof that he made it to the top!

Here's Carmie at the top

At our Saturday brunch

 

724, 725 + 620, 621 Weeks

The last two weeks have been quite a roller coaster!  Carmie has been extremely nauseous, so I started keeping a food and nausea diary for her last Wednesday, as I have to figure out what is going on.  I thought perhaps it was dairy related (and it still might be), but she seems to get nauseous most times when she eats.  On Thursday night she was feeling terrible, and then the vomiting started.  She was ill all night, all the next day, and most of Saturday too, finally able to keep food down by dinner time.  She has slowly been getting her appetite back this week, however the nausea is still ever-present.  To top things off, I fell over on Thursday morning - I was taking Arley on a morning walk (which took a lot of convincing!) and I made it about three metres past the end of the driveway before I slipped in the mud and went down on my knee, onto the concrete.  Of course, because this is me, this wasn't a normal graze, and it got inflamed and started getting infected, and over the course of the next three days, walking felt like someone was sticking a red-hot poker into my knee cap.  I had a cane and everything.  And I tell you, hobbling down the hallway at 3am, and 4:30am, and 5:30 am to clean up Carmie's vomit wasn't the best time I ever had.  She only wanted me, but Jeff ended up taking over after that because I couldn't do it anymore.  Fun times!  My knee is healing and at least I can walk now, and Carmie is not ill anymore, so double win!

Arley has been doing well.  He had a good OT session on Monday.  He is able to talk about his sensory issues with the OTs now, and they are going to start working on doing things in the kitchen with him.  He went bike riding with Clint around the neighbourhood, and Clint said he did really well.  We have a new electronic calendar that has a routine and chore chart in it with a reward system, and Arley is very intent on earning his chosen rewards, so he is actually doing things I ask him to do (via the chore chart).  I'm hoping the novelty doesn't wear off - he's even doing his laundry right now as I type!

I have found a support worker to come do Carmie's physio exercises with her.  She is a paediatric physio who does support work on the side, so how good is that?!  She will be doing half hour sessions with Carmie here at the house, Thursday mornings and Monday afternoons.  I have also found a disability drive service that we have started using to get Carmie to her D&D sessions.  This frees up my afternoons, so I couldn't be happier about this.  So far they can only do Tuesdays, but they will be driving her on Wednesdays and Fridays as well soon.

This all means that I can plan on doing more painting.  I have been doing a simple online painting course to get my mojo back, and I have been loving it.  Things have been a bit of a shemozzle this week and I haven't had a chance to sit at my easel, but I am hopeful my time will be freer very soon!

I took Arley to get his hair cut this morning.  It is not easy to convince him to get it cut, but I got him there and got it cut, and he was great.  He did get to go to the supermarket for a treat afterwards, but it was worth it!

We are off to Lolo and Dida's now for some afternoon games and dinner :)

This morning waiting to get his hair cut.  LOL

722, 723 + 618, 619 Weeks

So, I have no photos from the past two weeks.  Not one.  Arley and I took a couple on our morning walk this morning, but they are horrible.  Carmie and I decided this morning that we were going to go for a walk at Currimundi Lake and then out to lunch, but on the drive there she came down with a headache.  I stopped at a pharmacy to get her some Advil, and continued driving to the lake, but within a few minutes she was nauseous, 7/10, and asked to go home.  Our morning was a bust, and Carmie is now in bed.  I have made an appointment with her endocrinologist, as her coeliac numbers are still high and our paediatrician requested it...but guess how much an endo appointment costs?  $510, with only half back on Medicare.  How can a half hour doctor's visit cost $510??!!  Ugh, it's crazy.  But, we've got to figure out what is going on with her belly.

We've had a few ups and downs over the last few weeks.  Arley and I have been butting heads - mostly because he is having trouble doing whatever is asked of him.  It's kind of driving me crazy, but there's not too much I can do except praise him when he is cooperative.  He had a good day yesterday - he was with Clint in the morning and at his social time with his buddy Liam until the afternoon.  I took Carmie to her physio appointment, and while she was there I took a walk through the neighbouring rain forest, and it was just what I needed.  I will be doing that whenever I take her to physio, as long as it's not raining.

We have made all the bookings and arrangements for Jeff's trip back to the States in June.  He will be gone for three weeks, which is the longest we've ever been apart...I'm not really looking forward to it!  I would love to go too, but we couldn't take the kids.  Vacations are all too difficult for us, I'm afraid.  Luckily we live in such a beautiful place.

We haven't been doing a lot.  We went to Lolo & Dida's for dinner.  One morning Carmie and I met up with Nicky and Lexi at Cotton Tree beach.  Of course I forgot to take any photos, but it was a really lovely morning.  We left Arley at home, as he was refusing to come.  I'm just going to start going out now, whether or not he and/or Carmie joins me.  I turn all the screens and internet off when I leave - I figure one day he might just be bored enough to join me!

Hopefully I'll have some good photos for next week.

720, 721 + 616, 617 Weeks

It has been a big two weeks, but despite this, we are all remarkably chill.  Easter was this past weekend, but in Jeff's own words, he "singlehandedly ruined Easter".  On Saturday morning I bought hot cross buns from the bakery, and I picked up a loaf of traditional sourdough bread, which I never do.  That night we had pasta, and I had the brilliant idea of asking Jeff to make garlic bread for us with the sourdough.  Unbeknownst to me, he gave Carmie a slice.  To his credit, the sourdough loaf did look exactly like one of Carmie's gluten free loaves of bread.  But anyway, Carmie ate it for dinner, and we were none the wiser until around 8:30 pm when she started vomiting.  The poor thing.  She was violently vomiting for the next two hours, and then when it seemed like there was nothing left, I went to bed.  When I woke up the next morning (Easter morning!) I discovered that poor Carms had been awake all night, throwing up on and off, and she couldn't get out of bed.  We cancelled our morning tea with Lolo and Dida as well as our Easter egg hunt, and poor Carmie spent the next two days in bed.  She was physically sick until Monday morning, and then was only able to get some food and drink in by Tuesday morning.  Arley was surprisingly patient about us having to postpone the egg hunt until Carmie was able to participate.  So, Easter was a bust!  Carmie is almost fully better as of today, but she still isn't eating much.

We had a paediatrician appointment for both kids on Tuesday morning.  We had known it was coming, and knew we had to get blood tests done on the kids.  We have never successfully gotten Arley's blood drawn except for under gas at the hospital, but they have closed that unit now, so we were fully prepped to go into a regular clinic.  I put the numbing cream on both the kids, and myself as well, as I had opted to get my blood drawn with them in solidarity (and to demonstrate to Arley how it is done).  Clint met us down at the clinic, and I got my blood drawn first, then Carmie (it took about 10 minutes to get her calm), and then it was Arley's turn.  The drama!  Oh my goodness, it was awful.  It took 45 minutes to just get him into the chair (all the while there were people waiting and listening in the next room!).  There were many tears, lots of shouting, lots of begging and bribing, and then finally Clint just picked him up and sat him in the chair with me.  I wrapped one leg over his legs, arm around his shoulders, hand shielding his eyes, then Clint had to pin him at the shoulder and at the wrist while two nurses took his bloods.  It was not fun!!  My heart broke for him.  He was terrified, poor bugger.  Afterwards Clint and I took the kids to McDonalds - it was one of the bribes I had made to get Arley into the chair.  Another one was that the kids could have unlimited screens until after Easter.  And then of course, Easter was postponed because of Carmie getting glutened...and now we have a three day long weekend ahead of us, so it looks like we will get back on track on Monday!

Other than those two big events, things have been fairly smooth sailing, I think mostly because of the unlimited screen time. LOL. I've been doing a little art work, getting some exercise in, and started a short painting course.  Jeffrey is still doing well at work, with three new sign ups this week, and three trial lessons already scheduled for next week.  The cooler weather is here, which is quite a nice change, and I've been able to get the kids going for a short walk with me in the mornings (separately - I have to do two walks!).  We had to cancel a few appointments over Easter, but the kids still saw Clint on Wednesday morning, for a bit of fishing off Chambers Island.  We are hoping to have a chill long weekend and start back full throttle on Monday.  Fingers crossed!

After Arley's successful blood draw. The patience of that nurse was remarkable! LOL

The only two photos I got of our postponed Easter egg hunt.  They are terrible, I know!

Fishing with Clint.  Note Carmie's t-shirt.  Haha

718, 719 + 614, 615 Weeks

Usually I don't have much to say, but it has been a busy few weeks!  Jeffrey's 54th birthday has been and gone.  His birthday was on a Monday and Jeff had to work, so we celebrated it on Sunday.  I made him his favourite chocolate brownies, and Mum and Geoff come over for cake and presents.  It was pretty chill, with no dramas, which is a success in my book.  Jeffrey and I spent the day hanging out together and I tried to spoil him rotten.  He says he had a good birthday - a day of fun with no drama.  Win!

This past Sunday Jeff and I flew to Sydney for a quick overnight trip to get his passport renewed.  It had expired, so we couldn't do it by mail, and Jeff missed the deadline to submit the paperwork for the regional travelling US consulate, which meant we had to go to Sydney.  We left early on Sunday morning and returned on Monday night, while Mum and Geoff looked after the kids.  It was such a short trip, but we did so much and had such a good time!  On Sunday we met my old high school friend Anna at the Opera Bar.  I hadn't seen her in about ten years (time flies!), and we had a blast.  Anna and Jeff get along really well too, and it was very easy to spend the afternoon with her.  We went from the Opera Bar at the Opera House, to travelling to Anna's place in Manly via the ferry.  We spent the afternoon at Anna's, then ferried back to the city and then over to North Sydney to our hotel.  Dinner out was lovely.  It was really good to be away having some alone time.  The next morning we went to the consulate to get his new passport (Success! We just have to wait a few weeks for it to arrive).  We then caught the train into the city, had morning tea at the QVB, walked to Darling Harbour where we had lunch, then made our way to Circular Quay.  We spent the afternoon travelling to Watson's Bay on the ferry, and we stopped there for some afternoon tea before ferrying back to the city and catching the train to the airport.  Busy busy!  I realise how much easier it is to get around when we don't have to plan for the kids!  LOL.

It is nice to be home knowing that we have taken care of Jeff's passport.  He is heading back home to the States in June.  I'm not looking forward to it, and so wish I could go too!

We have had a good couple of weeks.  I have made a new rule that the kids do not get to go on any screens until they have been up for three hours and done something productive.  At first this involved a lot of tears on Arley's part, and some very dramatic dialogue telling me I have ruined his life.  However, after a few days it has become our normal, and things aren't going too badly!  Clint has taken the kids out a couple of times.  Carmie has had physio and done very well at it.  We got a surprise this morning when Penny, the kids' behaviour specialist, didn't show up.  When I checked my email I found that I had been sent a message from her company saying she no longer worked for them and that all appointments, today and future, have been cancelled!  Carmie was a little upset, as she really likes Penny.  I am a little relieved as I am getting very tired of all of these therapy appointments.  I think we will take a break from behaviour therapy for a while - hopefully we won't need it at all in the future!  Carmie has also asked to stop doing speech therapy, and she has done so well that her therapist and I agree that she can stop, at least for the time being.  Happy days!

I had better run, as Jeff is on his way home from work and I need to get his dinner on.  He has had a good week too, with quite a few trial lessons lined up and a couple of sign-ups too. :)