590 + 486 Weeks

Phew, it is SO hot! We had a busy morning, starting with a visit to a farm so the kids could pet and feed the animals.  They loved it, particularly Arley.  It was a different farm to last time, and I paid to have the session all to ourselves so that Arley didn't get overwhelmed and he could participate.  He was very engaged.  Both kids milked a goat, and fed the baby goats, along with alpacas, a cow, chickens, some ducks, and horses.  Arley wants to go back every week, but I'm shooting for once a month.  It was great - until it got too hot and we had to leave, but we were there for almost an hour, so that's a win!  Afterwards Arley had his last session with his behaviour specialist while I took Carmie to her physio appointment.  We skipped Taekwon Do this afternoon - it was just way too hot.

We've had a good week.  On Monday the kids' support workers took them out, and I had three hours alone!  That is the longest time I've had alone in the house in two and a half years!  I didn't know what to do with myself!  Their support workers took them to an indoor play centre called Rush Adventureland.  The kids were very excited to go.  Arley managed to play for about half an hour before he got on his iPad and shut out the world with his headphones.  Carmie played longer, and then they all went out for ice cream.  It was a successful first outing, and I'll get three hours to myself every Monday if all goes well.

Carmie had an assessment with Riding for the Disabled on Tuesday.  She will be starting their Pony Club on Saturday, and it will run every other week.  I hope she goes OK when the weather gets hotter.  She's excited about it - we're hoping she makes some friends with a shared interest of horses.

Arley met his dietitian yesterday.  I have only done phone appointments with her, but now we will be meeting monthly in her office.  She had large containers filled with different snack foods, and Arley had to choose three and try them, and rate them from good to bad, with a couple of tastes of each food.  He did really well trying the snack food and she was surprised.  However she soon saw what we are up against when she tried to get him to touch a carrot with his finger.  There was nothing that was going to make him!  When we left she tried to give him the snack that he really enjoyed, and he wouldn't take it - he has zero interest in food.  We have a plan going forward, but she said she thinks it's going to be a very long time before Arley will be eating more and better foods.  It's very stressful when you have a kid who won't eat, and only eats snack foods when he does.  We are waiting to get him in for a blood test at the hospital where they can sedate him with gas, but we seem to be waiting a very long time.  Right now we are focusing on getting him to eat six times a day, and it can be anything at all.  Such a challenge!  It boggles my mind how our Coeliac kid is easier to feed!

Fingers crossed for another good week ahead!

589 + 485 Weeks

This week has flown by.  We are way too busy for our own good, and I have to take one day at a time or I get overwhelmed, but it's been a good week.  Carmie spent time with her support worker Abby on Monday and I spent that time with Arley.  He has been in a happy mood quite a bit this week, and amenable to reading new books and playing games.  We've been going to Taekwon Do and Arely's private lesson this week was the best one yet.  That afternoon the kids had a great horse riding lesson too.  Carmie started physiotherapy on Friday last week, and she had another session today.  Her physio has suggested she start swimming lessons to build up her strength, so we will be doing that next year when we have less on.  Carmie is such a good sport.  The physio sessions are clearly tiring for her, but she hasn't complained, even when I make her do them at home, which she has to do three to four times a week.  Both kids had OT this morning.  Arley and Toni the OT finished their sensory garden last time, so today they started organising their next project, which is to give Arley's bunk bed and bedroom a makeover.  He is very excited about it and is creating Pinterest boards with all of his ideas.  Carmie finished a piece of artwork she has been working on in Procreate.  She has spent hours and hours on it, so she is very proud of herself for finishing.

We have a ton of rain forecast for the next few days, so we will have some down time, which I am really looking forward to!

Doing carrot stretches with Dude

At physio

Carmie's artwork: a water dragon

588 + 484 Weeks

I have been sick since Monday.  Ugh.  Just a cold - not bad enough to be confined to bed, but bad enough to make me feel dysfunctional.  But life still goes on and I still have to function!  We didn't get to Taekwon Do on Monday or Tuesday, but I took Carmie this afternoon.  I got to watch, which was nice, because I never see her in action.  She's doing really well!  We are grading next month, so she's excited and nervous for that.

This morning I took Carmie back to the paediatrician for a follow-up appointment, and we got her X-ray results.  She does not have scoliosis!  Woot woot!  She does have a curvature of the spine and has to be monitored for it, but she starts at the physio tomorrow, so I expect her to be fine as far as scoliosis is concerned.  It's a relief!

We have had a bit of rain this week, and horse riding was washed out on Tuesday.  Our equine therapist cancelled the kids' lessons, but unbelievably, Arley was upset and asked if he could go out and just groom the horses!  I was dumbfounded - he never wants to leave the house!  So she gave him a grooming session, and he was happy.  It's such a good sign!  Carmie chose to stay home, so I set her some homework to do.  She is still writing her novella and participating in a creative writing class, which she is really enjoying.  She has also gotten very into animation and drawing on my iPad, and she spends a lot of time doing that, which makes me really happy, of course.

Arley and I have been going cane toad spotting in the evenings.  The season for them is just starting, and Arley loves to get a flashlight and go hunting for them.  Anything to do with animals gets him interested.  Plants as well.  The cane toads are pretty ugly, but he loves them.  He has different names for the different sizes, like toadlet and toadnager.  He is going to do a homeschool project on them, and he is actually excited about it.

I don't have much else to add, which I think is a good thing!

Giant bubbles to get him outside and sun on his skin

Sparring

Sparring with Mr Kelly

587 + 483 Weeks

It has been an interesting week!  We are doing well.  The weather has cooled a bit, which has been perfect for our activities.  On Friday I took the kids to a Little Farmers program to pet some baby goats and milk the mothers.  It went really well...at first.  The kids were really happy to be there.  Arley was very excited, and asked if he could come every week.  He loved the baby goats.  But, soon a few other families started arriving, and they brought with them little kids.  There were about 8 children under five, and within 15 minutes Arley had had enough and was done.  I tried to pressure him to stay so he could milk the mother goats, but he was far too stressed and begged to go back to the car.  Carmie and I stayed for the milking, but poor Arley missed out.  He has been asking if I can set up private sessions just for us, so I am going to look into it.  He doesn't do well in crowds, especially with little kids.  But boy were those goats cute!

We had an easy weekend at home.  It was a public holiday on Monday, so Jeffrey was home from work.  Arley's new mentor Zac came over.  The session was an hour long, and the deal was that Arley had to do 40 minutes of what Zac wanted and then they could end with 20 minutes of Xbox.  For 40 minutes Arley was grumpy and grouchy and needed two breaks...then as soon as it was Xbox time, Arley was happy and energetic and really connected with Zac.  Arley's OT today told me she thinks that's a success, so I'm going with it.  Toni the OT was over this morning and she and Arley finished the sensory garden they have been making.  Arley was really engaged and it was a great project.  And now he has to care for the garden, so it is ongoing.  Afterwards Toni worked with Carmie on her interoceptive awareness and describing feelings.  Half an hour after Carmie was finished with Toni, her new support worker Abby came over for two hours.  They get along well and I could hear Carmie having a good time.

On Tuesday Arley had one of his best days ever.  He had his private Taekwon Do lesson and did great, and even was able to learn some new techniques.  Then the kids had horse riding in the afternoon and he groomed two horses and rode a different horse to his usual.  He loved it.  It was easily his best equine therapy session since he's been at the new place.  He was so calm all day.  And Carmie - she had a great session too.  She is riding an ex-race horse who has a very big trot, so she's getting used to steering and trotting him.  Matt the behaviour specialist came over on Wednesday and had a session with Arley, and met Carmie for a chat, because they are going to start working together too.  I have a lot of faith in Matt, and I think it's great that the kids have a male therapist too.

I've been going to the gym, sleeping well and keeping busy too.  School holidays are over, so we are hoping to get out a little more now.  Fingers crossed!

Baby goats!

Carmie cleaning Chilly's hooves

Arley and Tigerlilly

Arley and Toni, his OT, making their therapy garden