560 + 456 Weeks

Today is Jeffrey's 51st birthday.  It has been a quiet one, which is a good thing.  He took Carmie down to her mentor.  She went kayaking and played chess, while Jeff sat by the water for two hours and read his book.  Meanwhile I took Arley to the grocery store.  Yesterday his OT recommended that I take him specifically to show him all the variety of food and to let him choose any new foods he might like to try.  I'm not sure I have mentioned it, but Arley also has something called ARFID, which is Avoidant Restrictive Food Intake Disorder.  Basically he eats very little, and he is dropping foods he likes all the time.  His OT has suggested we let him eat whatever he wants, whenever he wants, to try to get him to enjoy food.  So, we left the supermarket with Fruit Loops, blueberry muffins and some crackers that he used to like.  He has lost half a kilo in the last two weeks, so keep your fingers crossed.

Anyway, back to Jeffrey and his birthday.  He has had a nap this afternoon, and this evening we are getting take out - the kids pizza and me and Jeff sushi, and then we are watching a movie of Jeffrey's choice.  Simple stuff and a far cry from how we used to celebrate birthdays, but we are simply aiming for no drama, and so far, so good!

This week has been pretty good.  The kids have had their therapy and mentor sessions.  Arley is still struggling with having less screen time and puts up an argument most days.  He also isn't going to bed easily either.  Carmie's sleeping is ok, and we are weaning her off her sleeping pills.  Her friend Annabelle came over on Friday of last week and they had a lovely time, but her mother also broke the news to us that in a few months they will be travelling indefinitely, so both girls are quite upset.  Trust Carmie to make a good friend who won't be here for who knows how long!

When we get back from Ulladulla and Sydney, the kids will each be starting a social skills group.  Arley's group has three other boys in it who are 8 and similar to him, and Carmie's group has another girl her age and two older girls I think.  The program is nine weeks long and is supposed to be great.  I think it will be really good for both of them.  I'm so glad that we moved here, there are so many programs and mentors and opportunities for the kids.  It's pretty intense right now, but I'm hoping there will come a time when we are free of therapies!  We don't even have time for our beloved equine therapy right now :(

We made parachutes :)

Jeffrey's birthday

559 + 455 Weeks

For the most part, it has been a good week.  Carmie went to her new friend Annabelle’s house on Friday, and it was a great success, except for the fact that Arley was so upset that he wasn’t invited.  And he shouldn’t be invited, but he just can’t take the fact that Carmie can have separate friends to him.  He felt very sorry for himself.  They have never really had separate friends before, and I think he’s taking it quite hard.  But the good news is that Carmie had a great time and was cross when I showed up so early after only two hours.  We had to go get our hair cut, we were all looking so shaggy, so she had no choice!

On Saturday we met with my friend Jo and her son Flynn at the Botanic Gardens again.  There is a nature play area there, and it was lovely.  The gardens are very natural and peaceful, such a quiet place to go.  I will endeavour to go there without the kids one day.  They like the gardens, but they’re not nearly as peaceful as they could be for me!

The kids’ mentors came again on Monday, and Arley’s mentor Josh said he’s never seen Arley as happy and engaged as he was this week.  How good is that?  On Tuesday when I took him to Rob’s house, he got out of the car, ran in and didn’t even say goodbye.  After the kids’ sessions on Wednesday with Clint, I took both the kids to the mall to see Lexi, and we were out for ages and Arley didn’t complain once.  I had to leave the kids in the car for a few minutes, and they weren’t even fighting when I got back, they were playing with my phone and singing together!  What the hell?

It’s not all roses though.  On Wednesday morning while Carmie was having her session with Clint, Arley and I were waiting at the picnic area, and a mother and daughter came up and asked if we were part of the homeschool group that meets there.  The group wasn’t there yet, but I told the mother to sit and chat while they waited, because her daughter looked to be Carmie’s age.  We got to chatting, and the daughter is lovely, so the mother took my phone number down so we could get the girls together.  When Carmie came back we introduced her to the other girl, and it was Arley’s turn to go with Clint, but he wouldn’t get out from under the table.  Arley was just so upset that we had found another friend for Carmie.  He thinks everyone likes her and hates him.  After 15 minutes he came out from under the table and he put his head in my lap and sobbed.  It was awful.  Clint finally got Arley engaged in a play, and now Clint is on a mission to find Arley a friend to match him with too.

Arley went fishing again with Rob on Tuesday, and today Rob took Carmie kayaking.  Arley had his psychology appointment today, but he couldn’t do something she asked so he hung up on her!  Haha. It’s ok, I called her back (video chat), and we had a long talk.  She says Arley is very rigid and has black and white thinking, which is very typical of autistic people, but she says he is pretty extreme.  She said whenever we are trying to help or teach or discipline Arley, we have to apply logic and write things down so he can visualise it, for example make positive and negative lists. After the session, the kids’ new OT came to the house to meet them and do their first session.  Both kids really liked her, which is great.  I did too, she seems very knowledgeable and professional, but fun too.

I had an appointment with the paediatrician this afternoon regarding Carmie and her insomnia.  He said she has the worst case of insomnia he has ever seen in a child.  Carmie takes the prize.  We have a plan going forward, so keep your fingers crossed.

The kids and I are making the trip south in a few weeks.  We have to go to Sydney so their psychologist can do cognitive assessments on them.  So, we will find out just how smart they are, and where they are lacking in skills, so that we have an idea on how to move forward.  Given that we are headed to Sydney, we decided to go down to Ulladulla for a visit to Mum and Geoff and to see old friends.  We can’t wait.  The sad thing is that we will be leaving Jeffrey behind, and it’s over Easter.  This is the only time available though.  After Ulladulla we will be spending two nights in Bowral with my sister, and then Mum and I are taking the kids to Sydney for their assessments.  It will be a stressful trip, but it will be fun, and the assessments will help us a lot going forward.  Poor Jeffrey will be home alone for Easter though :(. Carmie has asked if we can postpone our egg hunt for when we get back, so he won’t miss out on it all.

The weather is still really hot here, but the days have been beautiful, and I’m so grateful!  Hoping for another good week coming up!

At the Botanic Gardens with Flynn

Waiting for Clint before the drama

558 + 454 Weeks

It's been a slow week but I am still utterly exhausted.  It's because Arley woke us up last night at 2:30am, too scared of the dark to walk down the hall to the bathroom.  By the time we woke up he had been crying from his bed for ages, and he was quite worked up. Being scared of the dark is a new one for him.  After I got him to the bathroom he decided he was hungry, so I had to go to the kitchen to find him something to eat.  One of the meds he's on makes him not hungry in the daytime, so he gets in all his calories from dinner time onwards.  The good news is that this is the best combo of meds we've had him on in a long time, so he will be staying on them and I don't have another paed appointment for Arley for three months.  I have one for Carmie next week though.  Carmie is sleeping better, but some nights she gets zero deep sleep, which is worrying.  I guess we will discuss it all next week.

On Friday I organised a playdate for Carmie with a girl called Annabelle over at our house.  Her mother Naomi brought her.  Arley was of course upset because he thinks Carmie has a million friends and he has none (wrong).  Carmie was annoyed because we met Annabelle and her brother at a homeschool meet and Carmie and Annabelle barely spoke.  But it turned out great!  The three of them played a game for quite a while, and then Arley was losing and started being difficult, so he went to his room (not as quietly as I might like!).  Carmie and Annabelle proceeded to have a great time!  So, Carmie has a new friend, and she's going to her house tomorrow morning for a few hours.  When Arley found out he was very upset, but he just has to get used to the two of them having separate friends.  

On Tuesday Arley went to his mentor's place and played Minecraft with the other little boy, and today Carmie went there and their mentor took her to the arcade.  Arley had his friend Chayse over, and they hadn't seen each other since before Christmas, so it was good for them to reconnect.

On Wednesday the kids saw their other mentor at Chambers Island.  I guess the crazy rains have brought out all the sand flies, because I got eaten alive.  It's awful.  And it turns out I have developed an allergy to mosquito bites and sandfly bites, so I'm pretty much in fiery itching hell right now.  Anyway, after that I took the kids to the mall to shop for Jeffrey's upcoming birthday.  I sat the kids down for lunch and went clothes shopping myself because I guess all this exercising at the gym is paying off, and nothing is fitting me.  Carmie wanted sushi for lunch - this is a first for her, and she liked it!  If only the same could be said for Arley...he had a bag of Burger Rings (a ring-shaped Australian chip).

So, I guess it was a good week.  Arley is still pretty angry and Carmie is still very emotional, but what's new?!

At Chambers Island with their mentor while I was getting eaten alive

At the mall eating sushi

Today at the arcade

557 + 453 Weeks

It has been a good week, but I am thoroughly overwhelmed!  I feel like I'm scrambling to get on top of things and not forget appointments (like when the realtor came over for an inspection today despite the fact that it's on my calendar and I've mentioned it twice in the last week).  Mum and Geoff left on Wednesday morning.  It was lovely having them up here.  We saw them most days and spent some really fun times with them, playing games, playing darts and swimming in the pool (see the video below for proof of our family's blow-up pool pets abilities).  Carmie cried when they left, as did Mum, and Arley is upset too but not talking to us about it. Hopefully they will be able to move up here soon.

We had some trampoline fun this week, and we also got to the beach, a new one that we hadn't been to before.  The beaches here are a mess because of all the rains we have had, so they are not looking their best.  We still went for a paddle and a play though, and the water was so warm.  It was tough convincing Arley that we should all go to the beach, but once he got there, he had a really good time.

When it hasn't been raining, it has been stinking hot!  Really humid and awful.  I've been in the pool but everyone else just wanted to stay indoors in the air conditioning.  Yesterday I took the kids to have their session with Clint at Chambers Island, and they loved it.  He is so fun, and gets them climbing trees and jumping around, despite the heat.  On Tuesday Arley saw Rob and tried his hand at kayaking.  He hated it!  So typical.  But he had fun with the other boy who was there, so that was good.  On Monday the kids had their mentors come over and both had good sessions.  Arley says he is bored but that's pretty standard!  And Carmie is always happy to see and play with her mentor.

So, it's been a good but exhausting week.  Hoping next week is even better :)

Must watch video!

https://youtu.be/IfplPOMeT8o

My office when Arley is with Rob :)

556 + 452 Weeks

What a crazy rainy week it has been!  I haven't ever seen rain like this.  It has been insane.  Many thousands of people have lost their homes and belongings,  and so far, nine people have died.  The silly thing is, Mum and Geoff had planned a trip up here.  They left on Friday in torrential rain and stayed the night in Sydney.  Then they drove through more torrential rain for most of Saturday and stayed the night in Ballina.  On Sunday morning they drove through rain and made it to Brisbane, an hour and a half away, before they discovered the highway up to the Sunshine Coast was closed due to flooding.  They tried every back road they could, with most of them closed as well.  They were persistent!  They found a route up and braved it, but hit a pothole and got a flat tire.  A local guy stopped to help them (the guy actually went home and got his swimmers on, and some tools and drove back in torrential downpour to put their donut tire on for them!).  They made it to a local McDonalds where there were a ton of people stranded.  They joined a convoy of cars that were heading north on back roads.  They got lost from the convoy and had to turn around.  But they finally made it, eight hours later!  Sheer craziness, but we are very thankful!  We didn't  tell the kids so they would get a big surprise again.  We put Lolo and Dida in Jeff's guitar room, and then I told the kids I had made a treasure hunt for them.  Lolo and Dida were the treasure :)

So, we have been spending a lot of time with the kids' Lolo and Dida.  It has been really nice to have them up here.  Luckily we have had a few days of sunshine, which was great.  Arley's psychologist suggested that he would really benefit from having a trampoline again, so we bought a second hand one that is practically brand new.  We spent an afternoon with Lolo and Dida putting the giant tramp together.  Yesterday we met them in Mooloolaba for lunch.  This was a little disastrous, trying to find somewhere we could all eat.  We settled on giving the kids ice cream for lunch (!) and then Mum and Geoff took the kids back to our place, while Jeffrey and I stayed out.  We did a house swap so that Jeff and I could have a night off.  We had the afternoon lazing around, dinner on the beach, and a sleep-in this morning.  It was our first break in seven months!  So necessary!

Due to all the rains and flooding, Mum and Geoff were able to extend their stay here, as no-one is foolish enough to drive in this weather!  They'll be leaving on Wednesday of next week.  It has been raining badly again today, and it looks like we'll have rain on and off for the next week.  The supermarkets are all out of food because the highways were closed, but luckily I'm a chronic over-shopper, so we are doing fine!

We cancelled some of the kids' activities this week because of Lolo and Dida.  Arley still saw Rob on Tuesday.  He was very nervous to go and I had to stay for a little while to get him settled in, but he was fine and happy when I returned.  He'd had a good play with Rob and the other little boy.  Carmie and Arley both had their psychology sessions.  And this afternoon I had an appointment with the kids' paediatrician and we are finally getting help for Carmie's insomnia!  He's putting her on a new sleep med for a month or so to try to get her sleeping back to normal, and then we will revisit for a long-term plan.  I'm just so thankful we are getting help!

Wish us luck staying dry this week!