503 + 399 Weeks

It has actually been a good week, despite all the rain.  We’ve had one day of good weather, and luckily that was Monday so we got to go to our Coffs homeschool meet.  We all met at the sea pool in Sawtell, and it was a really good turnout.  We met new parents and kids, and it was really fun.  Carmie and Arley were quite reserved at first, and Arley was doing his normal “I’m bored, can we go home?” routine.  I gave Carmie the mission to make friends with at least one new kid, and poor Carms, she tried so hard, but the first two girls (sisters) she asked to play both said no thank you!  Carmie got so upset she went and lay down on her towel for ages and was too scared to try again.  But a little later on she asked a boy to have a water fight with her and all the kids got involved, so it turned out alright.  And the two girls ended up chatting with her after all.  Even Arley joined in a little.

We haven’t done too much else because of the weather.  On Saturday the kids and I had our hair cut.  Arley gets very stressed getting his hair cut, so our hair dresser is going to start coming to our home to cut his hair, which is great.  Yesterday we took the kids to the museum and it was really good.  Arley carried on a bit, as to be expected, but it was interesting all the same.  Afterwards we went down to the harbour and had lunch, and it was a nice little outing. Today the kids had horse riding in the mud (it has been so wet here!), and then swimming this afternoon.  We’ve been keeping busy indoors.  We’ve played games, made ice cream and even done some math and writing (!!).

Carmie had her ADOS assessment as part of her autism assessment on Tuesday.  The ADOS is the standard test but it is geared towards boys, so the psychologist really has to think outside of the box.  Next week I have more questions to fill out as part of the assessment, and then the psych will write up her report.  She told me she is leaning towards a yes for autism.

Carmie’ s insomnia got a little better this week.  She had a bad night last night, but other than that she has really improved.  Thank goodness, because she was becoming really ill.  It was such a relief to see her sleep again.  She’s taking Catapres and melatonin to sleep, but we’ll try to ween her off at some point.

Arley has had a really good week.  We set up a teepee in his room with cushions and a lamp and squeezy toys for when he gets angry, and he hasn’t had to use it.  He loves it though, and so he reads and takes naps in it.  Carmie got one too.  I think this med combination is really working for him.  In a few days we are upping his Intuniv to 3mg from 2mg, and I think it’s going to be even more beneficial.  He still  gets angry and can be rude, but he hasn’t exploded like he usually does.  He had a very angry moment with Jeff tonight for ten minutes, and it got a little ugly, but it wasn't horrible.  They tend to butt heads.  It’s really nice not having to deal with explosive anger.  His psychologist is working on his anxiety, so that helps.  He goes back for another session on Tuesday.

We have a surprise for the kids.  My mum is secretly flying up to Coffs tomorrow to stay with us for six days.  The kids are going to be beside themselves.  My bet is that Carmie bursts into tears.  I’m looking forward to seeing the look on their faces!  And me and Jeff will actually be able to go our for a date night. Can’t wait!

After our hair cuts

Waiting for the homeschool kids at the Sawtell sea pool

At the museum.  It took them ages to guess what that was!

502 + 398 Weeks

It's Thursday again and this week has gone by in a flash.  It has been mostly rainy, so we have barely done anything at all.  On Monday we met the Coffs homeschool group up at Moonee Creek, which is just so beautiful.  What a great place for a play.  The only problem was that Carmie was suffering from sleep deprivation after two nights of insomnia.  She spent a lot of time lying down and reading.  She also went swimming and was having a good time...until her allergy to the cold started causing her breathing problems, and she got really scared.  She was on the other side of the inlet with another mother who brought her back.  Will and Charlie's mum had antihistamine with her, so we gave it to Carmie, rugged her up and put her in the car to warm up.  She was OK again in half an hour, but she was pretty frightened.  Arley ended up having a good play with Will and Charlie, which is good, because he was very resistant to playing for the first hour.  And he still refused to go swimming.

On Tuesday we had three therapy sessions.  The first one was in the morning - Arley saw his support worker while I met with the behaviour specialist.  Arley gets along really well with his support worker.  She is teaching him about different emotions.  He knows them all, but he has a problem with recognising them in other people.  More of a problem stepping out of his own point of view to recognise how others are feeling.  Anyway, after lunch I took him to see his psychologist.  It was his first real session with her, and she started working on his anxiety.  It was a really eye-opening session.  He knows himself very well. He started doing an anxiety workbook with her, and at one point he had to fill out what he is scared of.  Out of thirty different things to worry about (examples are: parents going out, swimming, barking dogs, bullies, heights, making mistakes), he checked off 14 that he is scared of.  They were the same 14 things that I would have checked off for him if I were doing it.  The one he was adamantly not scared of was bullies.  That doesn't surprise me at all!  Anyway, after his session, I took him home and then had to go back to the psychologist for the first session of Carmie's autism assessment.  I had to answer questions as if Carmie was 2, 3, 4 and 5 years old, so it wasn't easy, as that was a long time ago!  I have to go back tomorrow for another session, and then Carmie goes in next week to do the ADOS.  It is all very full on.  I was thoroughly exhausted on Tuesday night.

It has been raining so much, we didn't go to the Nambucca meet yesterday, nor to horse riding this morning.  The kids didn't go to swimming either, because Carmie was too exhausted.  She has had five nights straight of insomnia.  I had an appointment with their paediatrician on Friday, and we came up with two different plans to help her sleep, but neither worked, so yesterday I pulled her off all meds...and she still didn't sleep.  I had given her a melatonin, and when she came out at 10pm and was still awake, I gave her an antihistamine because I didn't know what else to do.  She fell asleep at 2am and woke up at 7am.  As you can imagine, she is a zombie.  I just hope she crashes tonight and catches up on her sleep.  She is getting really run down.  The good news is the paediatrician is helping us.  He is very concerned, and he told me he is not going to stop until he gets Carmie sleeping and Arley nice and calm.  I'm so thankful that we moved here, if only for the medical treatment!

I have a big day ahead of me tomorrow.  I am being interviewed for two podcasts (this will be my 4th and 5th, and I have two more lined up for next month).  I also have to go back to the psychologist too.  This weekend hopefully I'll get in some relaxing and family time.  I went to my doctor this past week for an insomnia check up and he set up a mental health plan for me, diagnosing me with adjustment disorder with anxiety features, and said I am burnt out.  This doesn't surprise me, but there's not much I can do about it right now.  He's sending me to see my own psychologist.  I just have to figure out how to fit it into my schedule!

I have barely any photos for this week :(

The beautiful Moonee Creek

This is what I get when I ask Arley to smile

Arley took this shot of me

Rainy day cookie making

501 + 397 Weeks

This week has gone by so quickly.  It's quite a blur really.  I don't think we did anything this past weekend, except for weed the garden some more (fun times).  On Monday we went to the Coffs homeschool group.  We met up at Never Never Creek in the Promised Lands.  As always, it was so beautiful.  The sound of the river alone is beautiful, let alone how it all looks.  The water is ice cold though.  That didn't stop Carmie from swimming.  Arley wouldn't touch the water and was being quite difficult again.  For the first hour he was a tough cookie, but then his friends Will and Charlie showed up and all was right with the world again.  They brought their new puppy with them, and the kids are enamoured.  It turned out to be a nice morning.

On Tuesday Arley had a session with the OT from his therapy team.  He did pretty well until he couldn't understand her instructions to walk heel to toe, and then he just shut down and was uncooperative.  She is completing a report for me, so she wasn't bothered, she just said his behaviour just backs up everything that I have told her.  It is all anxiety based.  When he doesn't understand something he gets performance anxiety and just shuts down.

After therapy we drove up to Bellingen to go to Will and Charlie's house.  They have just moved, and we hadn't been to their new home.  It was all screens-based for Arley, but Carmie had a play and had a visit with their cows and horses.

Jeffrey and Arley have been butting heads lately.  Our psychologist is making us read this book and fill out these forms, to ascertain our new family rules, and I think things are going to get a whole lot worse before they get better.  Arley is going to put us through hell when we lay down the new rules.  We're not quite ready to do so yet, so I'm trying not to panic about it.  I'm a little worried that these rules she's having us set up are for neurotypical kids.  I'm hoping we don't erode his self esteem any more :(

I'm happy to say that Carmie's sleep is getting back on track.  She's back on the dex, and still sleeping, so we are really happy about that.  And my doctor is having me take an insomnia course.  I'm up to session three.  I've had to track my sleep for a week and average out my hours of sleep each night (six and a half). Then I have to figure out what time I want to wake up (7am), then add half an hour to my six and a half average hours of sleep (seven), then subtract those seven hours from my wake up time and that is when I'm allowed to go to bed. I get to extend it by half an hour every week if my sleep goes well.  This is supposed to be some great cure for insomnia, but it just might do me in!

Today the kids had horse riding, and swimming.  Arley's horse riding instructor has had to go right back to basics with him  He is still trotting, but she has to run along side him.  His anxiety is just too high.  It's hard to watch, because I know what he is capable of, but at least he was calm and smiling up there on the horse.  Carmie had a great lesson, as usual.

There's not much more to add.  I'm hoping next week is smoother sailing.

At Never Never Creek with the homeschoolers

At Will and Charlie's

Carmie riding Rosie

Arley getting Rosie used to the lunge

500 + 396 Weeks

It has been a rather challenging week.  I can't even remember what we did over the weekend.  I do however remember Arley's massive meltdown on Saturday night.  He lost the plot after hours of being frustrated that his computer is lagging.  He came to dinner and was really dysregulated, and he just escalated from there.  He got very abusive, and I ended up having to leave the house to take some time to myself.  I left for almost an hour, and he was very apologetic when I came home.  It was all really awful.  We are trying to teach him to regulate himself when he escalates.  His therapy team came over for a session on Tuesday morning, and we are starting to get a plan together.  We are creating a calming down spot in his room with a dark teepee and a sensory box, and we're trying to come up with other strategies to help him.  On Tuesday afternoon I took him to his first psychology appointment.  His psychologist is the same one who is assessing Carmie.  She's really nice, and after asking me many questions, she said she is going to tackle Arley's anxiety right away, as his anxiety is the cause of most of our stresses.  I truly hope she can help him, help us.  It's a start, anyway.

Jeffrey and I spent half the day on Sunday weeding our giant garden bed.  It is horrendous.  We have discovered that things grow really well here in Coffs, including the weeds.  We simply cannot keep up with them.  The garden bed is very big and borders the entire front and back yards.  I have three blisters on my hands from our weeding session, and we barely even scratched the surface.  There is only so much we can do, because I am so busy, and Jeff is waiting for a hernia operation.  That's coming on March 9th.  And then he will have several weeks of recovery.  We will totally be overrun by weeds!

On Monday I organised a meet up with the Coffs Harbour homeschool group.  It was our first meet up, and we plan to do it every week.  This week we went to Diggers Beach.  All of the kids had a blast, except for mine!  Carmie had a big swim, but then she started feeling tired and weak (from her meds) and she sat like a little lump under her towel, facing away from the ocean.  Luckily I gave her some food and she revived after 45 minutes and had a good play.  Arley was another story.  He is used to jumping the high waves at Mollymook beach, which is a surf beach.  He has been doing that on his own for two or three years now.  But up here, he has anxiety at the beach and is scared to go in the ocean.  These waves are half the size he is used to, but now they are scary.  I feel like I'm losing my mind.  I managed to coerce him in for a swim for all of four minutes, and then he spent the rest of the time telling me he was bored and asking to go home.  It was pretty awful.  We were the first to leave the event I had organised.  :(  It's very stressful when he is like that, because he makes quite a scene in front of people (these were people that don't know his story too).  But we shall persist.

Yesterday I took the kids to the mall to go shopping.  Today only Arley went horse riding (and horse riding was a bust, he did nothing but complain!) and swimming, because Carmie is the worse for wear at the moment.  Her meds she is trialling are messing with her.  She was getting really dizzy and faint, so we lowered the dose, and then last night she slept from 10pm until 3am, and that is all.  So, we are switching things up a bit over the next few days on the paediatrician's recommendation.  We have another appointment with him on the 12th, so we'll see what happens then.  Carmie wants to stay on them because she enjoys being productive and able to do things, but not sleeping has to be sorted.  The only side effect Arley is having is he gets sleepy in the afternoons and often has a lovely nap, which is lovely for all of us!  :)

I have hardly any photos from this week.  Too stressed I think!  I took a few shots while we were playing lego.  Arley was not happy about it!

Homeschool group at Diggers Beach