564 + 460 Weeks

I can't believe a week has gone by already.  I had a night and a day off this week.  I drove down to Byron Bay to meet my sister who had flown up there to go house hunting.  We went out to dinner, relaxed by the pool, had a lovely breakfast out, and saw four beautiful but not-quite-right houses before I drove home.  It was a flash trip that we organised the day before, and given the fact that the kids were completely unprepared for me to leave, it all went well.  Jeffrey had the kids on his own which he isn't used to, and I had a lovely break!  How good is that?! :)

Jeffrey and I took the kids up to Noosa on Saturday.  It is only 50 minutes north of here, and very beautiful, with great shops and restaurants.  I hadn't been there since I was about 11.  We walked around, did as much window shopping as the kids would allow, found a restaurant we could all actually eat at, and then walked along the beach before heading home.  It was nice, and a relatively successful outing.

The kids had their Monday mentors and that went well.  On Tuesday their support workers came and looked after them for four hours.  Arley actually left the house with them to get bubble tea.  Jeffrey and I took the opportunity to go to the big mall and have a browse and buy a few things.  I'm still waiting for the day when I get a few minutes in the house alone, but I believe it will happen!

Arley has been quite shouty lately, losing his temper a lot.  We are bribing him with his iPad at dinner time if he hasn't shouted all day.  He gets one chance to calm himself down if he gets angry, and if he can do this throughout the day, he gets an iPad dinner.  So far, so good!  We have discovered that consequences, natural or not, just don't work with this kid, but the offer of more screen time does!

I don't have much else to report.  I'm still not 100% after COVID.  I am fully up and about, and will be starting back at the gym tomorrow, but I feel about 5-10% COVID-y.  Just not quite right. :(

Only a few pics this week, and none of Arley.

563 + 459 Weeks

It has been quite a week!  We were supposed to be in Bowral for Easter, and flying home from Sydney today, but that didn't happen.  Everyone is fully recovered from COVID except I have a lingering cough that is driving me crazy and giving me a headache.  Anyway, we had our Easter egg hunt at home with Jeffrey on Sunday.  The kids were very excited, and Arley said he thought it was the best Easter ever...until that evening when he discovered that Bella had eaten a good amount of his Easter eggs :(  Then it turned into the worst Easter ever.  Luckily Bella didn't get too sick.  She was a bit drooly and shaky the next morning, but she was OK.  She ate Arley's large egg, three small eggs, a couple of hollow eggs, a Kinder chicken, and 7 Lindor chocolate balls.  Those are the wrappers that we found in Arley's bedroom and scattered around the backyard.  So naughty!  I was worried about Bella, but by the time we discovered how much she'd eaten, it was beyond the timeframe of making her vomit.  And Arley is still upset about his lost Easter eggs!

We still haven't really left the house too much.  We got the kids to a park we had never been to before.  They had a little play and then we played a family game of Finska.  When we got home, Jeff and I both immediately fell asleep on the bed.  I am still very tired, and obviously not fully recovered yet.  It was good to get out though.  The kids and I have walked to our neighbourhood park a couple of times too.

The kids had their mentors Holly and Josh come over on Monday, and that went really well.  On Tuesdays I have organised for two other mentors to come take the kids off my hands for four hours.  Arley's mentor's name is Jack (we have met him a few times before), and Carmie's mentor's name is Abbey.  The plan is that the mentors work with the kids one on one but together at first, taking them places together and then eventually separating them.  It was supposed to be my first time in the house alone on Tuesday (the last two times I had planned this, it completely fell through).  The mentors were supposed to come play games at home with the kids for an hour to connect with them, then take them to the supermarket, then out on a picnic lunch.  Arley refused to go.  When he found out that the mentors were staying for four hours, he freaked out, said it was way too long, and then refused to leave the house without me.  No amount of bribery was working.  So the mentors ended up taking Carmie up to the shops to get some bubble tea, and they brought some home for Arley and then played with the kids in the house.  So, it didn't quite go to plan.

The kids both had their psychology sessions again, and we are working on creating consistent schedules for the kids that include exercise and project work and social time.  It's not easy because they have so many therapies on and Arley hates to leave the house.  He started his social skills group yesterday and he actually quite liked it.  Carmie starts hers tomorrow and I think she's looking forward to it too.

I'm thoroughly exhausted from this parenting business!  Plus, I published a small book this week called "After Your Child's Autism Diagnosis".  It's on Amazon.  I'm glad it's done - I've had it in me for a while, nagging at me, so now it's out there :)  But it's no wonder that I'm tired!

562 + 458 Weeks

So, we never made it to Ulladulla, Bowral and Sydney.  On Thursday of last week I thought I had overdone it at the gym because I was achy.  I went to bed early with a headache.  On Friday the headache was still there and nothing I took got rid of it.  I was still achy.  Over the course of the day I took two RATs and both were negative.  So I went ahead and checked into our flights online, and ordered groceries for our stay in Ulladulla.  I woke up early on Saturday morning, and knew something wasn’t right.  I tested positive for Covid two hours before we were to fly out :(. SO bummed!  Then I had to spend the next hour with an aching head cancelling our flights and groceries.  Cancelling the flights was a drama, because of course, I had already checked us in.  And then I went to bed for two days.  The kids were really upset.  They were expecting to get on a plane for a vacation, and instead they were told their mum was in bed with Covid and they were staying put.  Arley wanted Covid too so he could come into my room and be with me.  Carmie also got a sore throat and was tired.  We never tested her, but she definitely has it too.  She broke out into a rash / hives on her legs yesterday.  She doesn’t have much energy.  And Jeffrey tested positive yesterday, but he is hardly affected at all.  He’s up and about today washing the cars - so he is definitely doing fine!  Arley is the only one who isn’t sick at all.  He is actually in screen heaven.  You’d think he would get bored of being on his screens, but nope.  He’s only bored off his screens.

So, I have nothing to report this week except for illness.  The good thing about getting it now is that I had done two weeks of extra work so that I wouldn’t have to work while we were away, and I had cancelled all of our appointments because we weren’t going to be here.  So we have been able to take it easy.  I was really looking forward to getting the kids’ cognitive assessments done, but we’ll have to wait on these.  Next week the kids are starting a social skills program each that goes for nine weeks long, so we will have to wait until at least June to get the tests done.  And I’m not loving the thought of the south coast during the winter (it’s one of the reasons I wanted to move from there so badly!), but we’ll go then if we have to.

So, I only have one photo from this week - Carmie saw a photo of her Oma and Opa from 1983, and she couldn’t stop laughing, so I snapped a photo.  Hopefully I’ll have better news and more photos next week :)

561 + 457 Weeks

We've had a few ups and downs this week.  A highlight was Autism Awareness Day and an autie party that we went to on Saturday.  There is a new centre for autistic kids opening up and they had an opening day party.  All the kids there were autistic, as well as the mentors (some were ADHD), and it was great.  Everyone was inclusive and understanding of needs.  They even managed to find a pair of socks for Arley to wear on the jumping castle because he hates being barefoot.  They had a mini ferris wheel that the kids went on, and they gave them water pistols to shoot each other and bystanders with.  There was cotton candy, donuts, popcorn, slushies...the kids were in heaven.  I haven't seen Arley eat so much ever.  He told me he was trying to get in as much of the food as he could, and that is exactly what he did.  The kids had a blast, and Jeffrey and I learned about the centre, which is great, so we are signing the kids up for their social activities when they officially open.  This is what I mean about the great services here.  So thankful!

Carmie has had a quiet week.  She is weaned off her sleeping pills and is taking long-acting Clonidine.  She's not sleeping as much as she should, but she is doing much better than she was before, so we take that as a win.  She had a great session with Clint yesterday, and apparently she climbed incredibly high in the trees.  I'm glad I didn't see it!  Arley didn't have such a great session - he got stuck on a rather low branch and couldn't get down.  He got embarrassed and anxious, and kept telling Clint to go away.  I had to go find them and rescue him down.  He told me he was going to stay there for three hours, so I tricked him into holding my phone and got him down when his hands were busy.  He got really mad at me, but he was on the ground!  After Clint we stopped by the kids' friend Lexi's house to see their new puppy, who is gorgeous.  The kids want a little puppy like that so badly.  We've got old lady Bella, and we love her, but she's pretty sleepy these days.

Because it's school holidays there are some different activities on, and I booked the kids into one of them.  It's called Wildlings, and it's a forest school.  Basically a beautiful place in the woods with a large creek running through it, gorgeous nature, and very few rules.  They were booked into the 'Wizards, Wands and Potions' class on Tuesday and the 'Primitive Weapons' class today.  Tuesday didn't go so well.  I was supposed to drop the kids off and go home and actually spend a few hours in the house alone, which I haven't done since I moved here.  But Arley's anxiety got the better of him and he refused to stay without me.  I told the workers there what was going on, but they were very little help, which was very disappointing.  I had to stay and do the activities with Arley.  I have always wanted the kids to try forest school, but after this experience, I realised it just isn't for them.  They need a whole lot more structure than was offered, a lot more support and guidance, and more stimulation too.  So, we cancelled the session for today.  I think Carmie would be OK there, but not Arley.  He actually yelled at me about it to his psychologist this morning.  But we had to try!

This afternoon we had a playdate with potential new friends for the kids.  It was rather awkward at first - all the kids were too shy to speak to each other.  The new friends were a 12 year old girl and her 10 year old brother, both autistic, ADHD and with anxiety, like ours.  Things got a little easier when Arley and the boy realised they both love Roblox.  Carmie and the girl soon started chatting, and there is a potential for friendships there, so keep your fingers crossed.

The kids and I are heading to Ulladulla on Saturday.  We are very excited, but sad to leave Jeffrey.  We might not be able to see too many people because we can't risk the kids getting Covid before their assessments, so we'll play it by ear.  My good friend Mark has Covid right now, and I was supposed to have dinner with him on Tuesday.  Fingers crossed everyone is clear by the time we get there.

At the autism party

At Wildlings

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