645 + 541 Weeks

I’m sitting at a cafe on the Esplanade in Caloundra with none other than Arley-Bear.  I just picked him up from a social group, and dropped Carmie off at her D&D group, so we have an hour to kill.  Arley did so well at his group today - they even managed to get him out of ‘the Nest’ and swimming at the beach, which meant he had to go change in the bathrooms, which is something I doubted would happen.  And I’ve just been told that one of the girls in the group has a crush on him!  I’m trying hard not to tease him because otherwise he might never go back!  Yesterday both kids went to their groups, Arley has another tomorrow morning, and now they are both going to groups on Saturday afternoon too. We now have a support worker doing a lot of the driving for us, so suddenly I have more free time than I’ve had in years, and I’m feeling a LOT less stressed!  It’s quite amazing.

The weather has been so hot and muggy this week.  On Tuesday after our Taekwon Do session (we are grading next week, by the way!), the kids and I went to see Lolo and we all went to Coolum Beach for a swim.  The water was really warm however it was rather choppy. The kids didn’t care, but Lolo was in a panic the whole time they were in the water. This was our first beach play this year, and I’m so relieved because the kids had a good time, and last summer I wasn’t able to get them to the beach at all. It was definitely a successful trip, despite all the sand stuck to Arley!  They always play well in the ocean and love jumping waves together, so it looks like it will be a fun summer :)

Carmie has had a good week.  She seems happy.  She is still drawing and animating a lot, but now she is also writing ‘fan fiction’ about the characters she has developed. It’s nice to see her being so creative. Makes this mummy proud!

I have been practising my unicycling and I’m almost ready to ride the pathways around the beaches where it’s more crowded.  I’m not scared of falling off and hurting myself, I’m scared of falling off and the unicycle spinning off and taking someone out!  Jeff and I have been riding around the empty university campus on the weekends so there is no danger of me injuring someone. I have a few bruises on top of bruises, but nothing I can't handle!

I don’t have much else to say except that Lolo and Dida are coming down tonight to look after the kids, so Jeffrey and I can go to a candlelight outdoor classical music concert.  We are really looking forward to it!

Me with my friend Nicky's baby, Evie.

Beach day

Sweet Bella

This is what happens when I try to get a good photo of Arley :(

644 + 540 Weeks

It has been a really good week.  On Friday morning we had a 'family sports day', and Lolo and Dida and Georgia and Zach came over for some fun at the park.  We did some archery and played some baseball, and then Georgia had a try of my unicycle. She did ok for her first go.  That night, after Carmie's social group, we had a family dinner at our place to say goodbye to my nephew Zach.  Georgia took him back home to Bowral on Saturday morning. We had a tostada night and finished off with a gluten and dairy free chocolate cheesecake, which was actually delicious despite how it sounds!

On Saturday morning I drove Arley down to Caloundra to try a new social group at the Nest.  He stayed for two of the four hours, but left because there was a boy there who we both thought was a girl, who was driving Arley crazy.  This boy, who was only 8, decided that Arley was his friend, and Arley does not do well with younger kids and has no tolerance for immaturity.  Luckily I was hanging around in a local cafe so Arley could leave when he wanted to. I was very proud of him trying it out.

Carmie went to her social group on Saturday and had a blast.  She is loving her groups.  They both went to their groups on Wednesday too, but Arley was supposed to be hanging with his buddy Liam, however the support worker took Liam to the park, and Arley hung out with the girls.  None of them seemed to mind, so it's all good.  Arley is having a great time there too, and wants to make more friends.  He told me this morning he wants to go to a social group every day!  This is such a turn-around, we can't quite believe it.  So, I've organised for Chayse to join a group with Arley on Friday mornings, and then Chayse's mum Andrea and I can share the driving.  Arley has also asked to try the Saturday morning group again, despite that kid. I think he’s finding his independence! I also asked him if he wanted to quit seeing Clint on Friday mornings but he asked to change him to another day, so right now Clint and Arley are off swimming somewhere and Carmie is at her D&D group. My babies are growing up!

On Tuesday morning we went to our Taekwon Do lesson (it went well and we’ll all be grading up soon), and then we drove up to Lolo and Dida’s to spend some time with them. Afterwards we popped in to horse riding to give them thank-you gifts, and Carmie wanted some time with Chilly, the horse she used to ride.  It was lovely but sad to be back there again. Carmie groomed Chilly, and silly Arley spent most of the time kicking the dirt complaining about how unfair it was that they couldn’t ride anymore. This from the kid I used to have to beg to get on a horse. As soon as you ask him to do something, it’s a no, but as soon as he isn’t allowed to do something, he’s all about it. 

I don’t think I’ve ever mentioned Carmie’s animating that she’s been doing. Animation has been her special interest for a while now, and she spends a lot of every day drawing and animating on her ipad. She is getting really good.  She puts in so much effort. It takes her about 18 hours of work for a 5 second clip. Its huge!

I am finally competent enough on the unicycle to hit the streets, so on Sunday Jeffrey and I went to Sippy Downs, our old stomping ground, to unicycle around the lakes. It is so fun. A little scary still, and I can’t manouvre around people and obstacles very well, but I’m getting there!

No big dramas this week, which is very refreshing!

Georgia learning the unicycle:

https://youtube.com/shorts/QUA0CDn8ohM?feature=share

And me, showing how it's done!

https://youtu.be/oHau18GjnNY

643 + 539 Weeks

This week has flown by!  I'm not typing this as I sit by the water like I did last week.  That's because we cancelled Carmie's D&D social group today as my sister is in town for a few days.  Instead I took Arley mini-golfing with her and Zach and my parents.  Carmie stayed home with Jeffrey because she wasn't terribly well.  She gets really bad cramps, and today was one of those days.  Mini-golfing was really fun - we did 18 holes and I lost, but that's OK.  Arley got through 9 holes and was very calm, even though he was worried that it would take too long and he'd get upset.  He did really well.

Yesterday the kids' support worker Savannah picked them up as she does every Wednesday to take them to see Clint, and then on down to Caloundra to join their social groups.  It didn't quite go as planned, with Arley tormenting Carmie a little, then Carmie lashing out, then Arley retaliating...which lead to Carmie crying in the bathroom, Arley refusing to go into his group, and Savannah bringing both kids home.  I had a lunch with Mum and Georgia planned, so I took Carmie as well, as she was quite upset and I wanted to treat her to something special.  We went to my favourite restaurant here, and I ate such a big meal that I didn't need dinner that night!

It was Halloween on Tuesday.  Arley was quite excited for it, but Carmie was 'eh'.  She can't eat much of the candy anyway, and she's getting a little old for it.  Carmie wanted to go to a party at The Nest (which is what the location of their social groups is called), but Arley wanted to go trick or treating.  We thought we would compromise so we went to a well known "Halloween" street here, and then took the kids to the party afterwards, leaving 2 hours for Jeff and I to wander the boardwalk and go out to dinner.  We were stoked!  However, things didn't quite go to plan.  The Halloween street was very busy, so the people were only handing out one small candy each, so Arley only had about ten candies, and he was not happy.  We went off to the party and left the kids there.  Jeff and I took a walk on the Esplanade and then went to a Mexican restaurant we like.  I had just put in our order for food and drink when Tanya, the owner of the social group business, came and found us to tell us that Carmie was having sensory issues and was about to go into meltdown and wanted to go home.  So I went and collected the kids, brought them back to the restaurant, bought them hot chips and sodas, and then Jeff and I rushed through our dinner to get Carmie home.  When we got home, I then walked Arley through our neighbourhood in the dark, to get him more candy.  And then, finally, he was happy.

I met with an  new OT today.  She is starting up with the kids in two weeks.  She came over to meet us and I had a two hour appointment with her to discuss the kids' challenges.  I am hopeful but not optimistic that she can help - we have been through so many therapists.  We shall see!

That's it for this week.  At least I got a few photos!

642 + 538 Weeks

I’m sitting at a cafe on the Esplanade in Caloundra while Carmie is in her Dungeons & Dragons group.  This is going to be my new Thursday thing - writing my blog, drinking a chai and looking at the ocean, while Carmie is off being social. She is starting another social group on Saturday, for teen girls. Arley is so pissed off, he desperately wants to join her groups.  He thinks that all the groups for his age are full of ‘braindead, annoying kids’.  They both came down here for their Wednesday groups, and Arley got to go swimming with his mate Liam at Kings Beach pool.  However, Arley did spend a lot of his time worming his way into Carmie’s girls group. Luckily Carmie didnt seem to mind.

We have had a good week.  Clint took Arley to the zoo Wildlife HQ on Friday, and I gave Carmie an art lessson.  I’m trying to teach her perspective, not such an easy lesson.  I am trying to get the kids exercising more (not an easy feat!), so we’ve been going to the park in the mornings to play sports games and activities. I hope we can keep it up, but the heat is starting to set in.  On Monday the kids’ friend Chayse came over for an art lesson from me. He is doing distance ed, and I’m helping with his art projects. Afterwards Arley and Chayse had a good swim in the pool, and then Chayse and Carmie played VR together. It’s so nice to see the kids doing regular kid things with friends - there have been times when I doubted it would ever happen.

Speaking of friends, I can feel a difference in the kids lately.  It feels like they are pulling away a bit, which is the normal course of things for tweens.  I’m trying to take it in stride and enjoy the more freeing aspects, but it feels quite strange. Carmie is looking for every social opportunity she can, doing four social groups a week, and Arley’s jealousy about it is bad! He wants a good group of friends, and a close friend he can chat to online. He is really maturing lately, developing a sense of humour, and I’m hoping it won’t be long for him.

Jeff has gotten more students this week, and I have been painting and loving it.  We don’t have as many activities on at the moment, and it looks like we wont be doing horse riding anymore, which is really sad. Carmie had a cry. Next month we will be starting with a new OT as well as a new behaviour specialist. This means our days will be filling up again, so I’m going to enjoy the low demands while I can! (If you consider being a taxi driver to my daughter low demand!)

Clint took this photo at their Wednesday session.  Arley usually doesn't get up into the trees!

641 + 537 Weeks

Argh, I have no photos for this week.  I don't think I've ever had not a single photo.  We have had a busy week, but no photo opportunities.  We didn't do horse riding, as we are still trying to get the NDIS to pay for it as a therapy.  Sadly I don't think this is going to happen.  Arley doesn't mind, but Carmie is very sad.  It is such nonsense too, because it is SO beneficial for them.  It is an expensive sport, and we can't afford to do it without the funding.  I'm really sad about it.

Arley went back to the dentist (all is well) and then to the chiropractor.  We aren't taking Carmie to the chiro any more.  Instead I had planned to take her bouldering (rock climbing at an indoor bouldering place) thinking this would be great strength-building for her back, and I did this, however she had an anxiety attack and we had to leave.  I took her to the doctor yesterday and he has upped her anxiety medication, as this is the fourth anxiety attack she has had in the past few months.

Arley and I went to his private Taekwon Do lesson on Tuesday morning, and it was great.  Arley was breaking boards like a champion.  Carmie stayed at home because her arms were sore from her 10 minutes of bouldering the day before (!).  On Wednesday the kids went with their support worker Savannah, off to see Clint and then down to their social groups in Caloundra.  Then Jeff picked them up at 2pm, which meant that I got from 9am-2:30pm child-free!  I just ran errands and caught up on work.  The nice thing is, every Wednesday will be like this, except during school holidays.  It is such a relief to get a small break each week.

I don't have much else to add, and I'm totally bummed I have no photos from this week!

640 + 536 Weeks

This week has been very busy and somewhat surprising.  The kids received their NDIS funding again, but some things were not covered for this year, like equine therapy (!!), so we have had to take a break for a little while.  I have a support coordinator helping us get horse riding back into the kids’ plans, but it might take a little while.  They got a ton of money for other services, like behaviour therapy, and speech therapy, which is great.  They also received a fair amount of funding for social activities.  On Tuesday we went to Taekwon Do for the first time in ages.  It has been school holidays, and then I tried to take Carmie to the after school class on Monday but she had an anxiety attack.  We have decided to only do our private session once a week, and then practise at home.  On Wednesday I took the kids to see Clint at Chambers Island, and then I took Carmie down to Caloundra to her girls’ group.  I had organised with my friend Kim that her son Liam and Arley would start a social group of their own, so now both kids have a group to go to on Wednesdays, at the same place.  Arley has been desperate to join Carmie’s girls’ group, so he is very chuffed that he can now hang out in the same place.  Kim and I both stayed the full three hours to make sure our boys were ok for their first group, and it went great.  It was a little touch and go at first.  Their support worker, a young guy called Bailey, took them for a walk to the park and to the rock pools, and then back to the ‘nest’ to hang out with the girls.  Both boys loved it, and the girls were all happy too.  And more importantly, now I will get a break every Wednesday from 9 - 2!  When we got home, Arley said, “Ha! I knew I was going to join the girls’ group at some point!”.  He has been SO jealous.

Arley earned a reward for finding ten new foods he likes to eat, and he chose to go to Aussie World.  He had been waiting for ages to go, and we managed to fit it into our schedule yesterday, kind of.  We decided to wait for Jeff’s morning lesson to be done so he could come with us, but then we didn’t get out the door right away because Arley had an issue with his shoes.  We finally got to Aussie World, and the second ride we went on was the bumper cars.  Arley decided to drive one himself for the first time, and foolishly I didn’t go in the bumper car with him.  Of course he got stuck and turned around the wrong way, and Jeff and Carmie kept bumping into him, and he freaked out.  He got really mad and embarrassed, and when we were done, he went into meltdown.  It was awful.  I tried so many things to calm him down, but he was devasted.  He wanted to go home, and I felt so bad because it was his special day.  We tried to take him on the giant slide, but he was not emotionally regulated and when we got to the top and sat at the top of the slide, he was way too scared and started holding up the line, freaking out and crying. My heart broke for him.  I ended up having to walk him back down the stairs, tears pouring down his face.  Poor bugger.  I said we should go on the log ride to cool off before we headed home, so we did that, and he loved it.  Meltdown stopped, but we had lost so much time there, and had to leave by 12:15.  So it wasn’t the best morning.  We went home so I could have my meeting and Jeff could give his lesson, then I grabbed Arley and we went back to Aussie World for another hour, just him and me, and we had a blast.  So, it worked out ok in the end. But then I had to race home, drop off Arley, pick up Carmie and take her down to Caloundra for her D&D group, then wait down there doing work while she had fun, then brought her home in time for dinner, which I didn’t have in me to cook after such a long day, so we grabbed pizza and sushi.  I was exhausted!

I’m trying to think what else we got up to, but my brain isn’t working.  I know we’ve played a few games and the kids have had a lot of computer time. I did a little painting, and Jeff seems to always have a guitar in his hands these days.  His guitar school is going really well, he has abnout 35 students now!

At the rockpools, during his group with Liam

Before disaster struck!

Ice cream always helps!

638+639 + 534+535 Weeks

I did not even realise that two weeks has gone by since I posted!  My 49th birthday came and went.  It was a good day!  I spoke with everyone I wanted to speak with, I was spoiled, the kids were great, and I got to relax.  We went out for lunch to our favourite restaurant.  The day before, we had a birthday lunch for both me and Dida at Lolo and Dida's.  It was a nice couple of days, until the night of my birthday when I started feeling sick.  I woke up the next day with a sore throat and headache, stiff all over, and then was sick for the next eight days!  Argh!  I have been sick so often, it's depressing.  Anyway, because it's school holidays I got to take it easy, so it was actually a good time to be sick.

We have all been doing well.  Arley and Jeffrey had a huge upset/incident on Tuesday morning which threw us all off for the day.  Arley had a meltdown, and I had to cancel Taekwon Do and horse riding.  I still got Carmie to horse riding, but then she was so emotional that she couldn't get on her horse and we ended up leaving too.  It was a very stressful day, but we got it sorted.  We cancelled Clint the next day too, because Carmie came down with a sore throat.  She didn't go to her wolfpack group either.  She seems to be doing fine now though.

I just got back from taking Arley to the paediatrician.  He is doing very well.  He is in the 50th percentile for both height and weight, which we are very happy about.  We need to watch his weight gain now, as we need it to slow down a bit.  From one worry to another!  I had taken him to the hospital to get his blood drawn (and it was so awful, I didn't think it was going to happen.  It took 40 minutes to calm him down enough to give him the gas, and then they were unable to get as much blood as they needed.  Stressful!).  Anyway, we got his blood results back, and he is iron deficient and his thyroid count is low.  She said ultimately he should get his blood tested again in three months, but that's just not going to happen.  We couldn't even get his blood pressure done today.  So hard!

We've all had hair cuts (including Lolo!), we've played lots of games and have been hanging out together a lot.  It's been really lovely.  I've even managed to get some painting in.  And I sold ND Renegade!  I'm very happy about it - my business was bought by another neurodivergent family in the States, and that makes me pretty happy.  So now I can focus on the kids, and paint in my free (!) time.

I'm sure there's a whole lot more that I have forgotten, but them's the breaks!

Two photos from Arley's trip to the aquarium with Clint.

Birthday lunch

She is a smart dog, but this is the fourth time!!

Photos to prove he survived his blood test (for next time!)

Pre-haircut

Improvising!  Arley wanted to roast marshmallows but we had no firewood.