520 + 416 Weeks

So, I wrote the following blog post yesterday afternoon, planning on positing last night...but then crisis happened.

Well, we have good news to report this week.  We have been noticing a change with Arley since we pulled him off the Intuniv and lowered his dose of Lovan.  He has been much happier (three epic, violent meltdowns, but none this week!).  At tennis on Friday Arley had his best lesson yet.  Afterwards, Jarrad our coach asked "Who is this kid??" and said he has never seen him so positive, with such a good attitude, and putting in so much effort and playing so well.  Then I took Carmie to see our psychologist on Monday and the psych told me afterwards that Carmie is in a really good place and she didn't think Carms needed to come back.  I then went to see the psych for Arley, and she said we should wait to see her again because it sounds like Arley is in a great place too.  Then on Tuesday Arley had a session with his support worker who also saw a different boy and wants to get him reevaluated for a new behaviour plan.  Arley is like a different kid!  He had one difficult day this week - that was yesterday.  We went out with new homeschool friends to Sawtell, and he was being troublesome and bothering Carmie, who was having some anxiety being out.  For the first hour or so, Carmie was really anxious and upset, and Arley was doing his utmost to make her worse.  But we settled in and it turned out to be a lovely time.  We built a little fire on the steps near the sea pool using sea grass and twine and whatever else we could find, and lit it using our flint. Arley did some whittling and the kids hung out and it was really fun.  Other than Arley being difficult then, he has been brilliant all week!

This morning I took Arley to the doctor to get paperwork to get his blood drawn.  I already had paperwork for Carmie.  We have to test their iron levels and calcium and zinc etc.  Right afterwards we went down to the lab to get the blood tests.  The kids weren't terribly happy about it but were up for it.  We had bought them numbing patches to wear.  Carmie went in first and freaked out when the numbing patch came off (it's like a big bandaid).  She was fine, but then the nurse couldn't find a vein.  She said Carmie had to drink more water before she tried again.  So then I took Arley in and he was calm and didn't even feel me take the patch off him.  But then he freaked out when it came to getting the needle, so the nurse couldn't take his blood either.  We are trying at a different lab tomorrow, one that has two nurses.  As we left the nurse wished me lots of luck.  I'm not sure we are going to be able to get their blood drawn.

I have been getting out every day with the kids, if only to the neighbourhood park.  One day we went to the oval and played tennis and baseball.  We've also been scooting and taking Bella for a walk - all without complaints from Arley!  Carmie is always happy to get out of the house, she is never a fuss.  Her sleeping is better because we are using 5mg of melatonin plus 3mg of slow-release melatonin, and she has been getting sleep every night.  She's been a little sick this week, just feeling a bit off, but nothing to worry about.

On Monday Lolo and Dida are coming to stay for a few days before they stay in an Air B&B.  Jeffrey and I are heading up to the Gold Coast for three nights and I can't wait! I'll be seeing a good friend from Aiglon (we're actually staying with him), so that will be a trip!

I told you it was good news!

After I wrote this, we had dinner, all was good.  Arley and I made blueberry muffins together, because he is on a muffin kick.  After his shower he came out to lick the bowl, then I sent him off to brush his teeth.  For some reason he started telling me he wasn't going to use the new reward app and he wasn't going to brush his teeth.  He was lying on the floor in the study, wrapped up in a blanket, refusing to brush his teeth or go to bed.  This all escalated into a horrible violent meltdown.  It was really terrible.  Carmie was really scared, Arley was out of control.  It went on for over an hour.  We all went to bed depleted and sad.  Today we are a little better.  We had tennis this morning, and Arley only participated for half the lesson (even though he was playing like a champ!).  The kids are both doing better now, and are friends and hanging out again.  Arley has lost his screens for four days because of the violence.  These highs and lows are killer.  

Arley playing tennis last week

We had to do a series of photos for the print company that we use

Park play - Arley smiling again!

Cricket

Baseball

519 + 415 Weeks

Another week's gone by and we're still here!  We have had quite a few volcanic meltdowns this week.  Arley is much happier and much more interested in doing things (and even trying new foods sometimes!), but he is also quite explosive, averaging an episode a day.  They are over quite quickly but have become quite violent, and he's very remorseful afterwards.  The good news is that the kids are actually playing together like real friends, for the first time ever.  Voluntarily choosing to play together.  It makes all the difference in the world.  The last few days haven't been very good, but before that Jeff and I were kind of dumbfounded by their friendship.  I truly hope it lasts!

We got out to dog beach this week, as Bella hadn't been there in a while.  Arley didn't really want to come, but I now have a bag of goodies I take with us when we go out, and when he realised we had that, he was happy.  We started a small fire at the beach using a magnifying glass, and both of the kids did some whittling with their knife.  They are really happy to be out as long as they are kept mentally busy.  So, I always have to be prepared.  It was fun for all of us though.

Yesterday we met up with homeschool friends at the trampoline place.  We were supposed to go for lunch at Sawtell afterwards but Carmie hurt her knee pretty badly (of course) so she didn't want to go.  It was fun while it lasted though.  Carmie is very sore today from all of the running and jumping and climbing.  She has had three nights this week of bad sleep, but thankfully last night she slept.  The paediatrician is at a bit of a loss regarding her insomnia, and says we can go up to 10mg of melatonin.  I hope we don't get to that stage.

As for Arley's meds, his dose of Lovan has been lowered and tomorrow we are starting on a low dose of an ADHD med called Strattera.  It is supposed to take about six weeks before we notice a change though, so we're not expecting any overnight miracles!

We had a dietician who specialises in kids with eating disorders come to our house this week to start a plan with Arley.  She is concerned with his diet (that's a no-brainer), and we have to get his iron and zinc levels checked.  We are going to get Carmie's checked too.  We see the dietician again in three weeks.  She is coming up with a plan to teach Arley about micro and macro nutrients in a fun way, and getting him to try new foods like he is a scientist.  Hoping this helps!

I have just come back from the doctor's this afternoon too.  He said my iron levels are completely back to normal (I was close to needing a transfusion!), but I'm not allowed to exercise with my arms for a month, because I have injured both of my shoulders and they are not healing.  I have to get x-rays on them to see what is going on.  Just my luck.  I have hated exercise for my entire life, and now that I'm actually enjoying it, I can't exercise!  I can't run either because of a pain in my hip and weak glute muscles.  Falling apart!

Not much more to add this week.  I think that is a good thing!

Eating a naughty donut

Enjoying the winter beach

518 + 414 Weeks

Well, Arley was sick with a cold all week.  We didn't go to the trampoline place as planned, or tennis, or swimming.  He says he feels fine, but he has been coughing and sneezing something terrible.  He is definitely getting better though.  I have felt off for three days too, like I was coming down with it but held it off with copious amounts of zinc.  I think I have been successful, because I'm feeling much better today. Yesterday Jeffrey put his back out, so he's been out of commission.  We're a family falling apart!  Miraculously Carmie hasn't gotten sick, and she's even been sleeping!

Over the weekend we did get out of the house both days.  We decided to explore Nana Glen, a small town near Coffs, thinking there was something to do there.  While it was beautiful, there was nothing to do!  We took a walk in a nature reserve, and then hightailed it over to Sapphire Beach so the kids could have a play in the park there.  The kids had fun, and even I climbed the rope tower, which is quite high!

On Sunday we decided to have a picnic at the Botanic Gardens because Jeff hadn't been there before, and they are really beautiful.  The kids weren't too thrilled about going, but amazingly both didn't complain too much and we got out the door.  It was a bit of a different story while we were there.  Arley was doing our heads in with his silliness and his noises and a little anger and his constant bugging.  It was not the most relaxing time, but it is definitely lovely there.  We had our picnic and then walked the longer way to the front gates, and then Arley wanted to visit the cemetery, so we sat on a bench while he visited the graves and looked up the names of the people on my phone.  He is an unusual boy!

Since Arley has been off his Intuniv, we realise how much the med was working for him (even though it was making him too sleepy and not eat.)  We have the old Arley back that we remember from Ulladulla.  While we love him to bits, he is quite hard to live with at the moment.  And now we know why.  We have started seeing one of Australia's experts in child psychology and autism.  We had two sessions this week, and she told us in her opinion Arley also has severe ADHD.  This doesn't surprise me.  I kept telling our old OT in Ulladulla that I thought he had ADHD, and she kept dismissing me, which now makes me really angry.  This is why we have so much trouble parenting him.  His attention span at the moment is about 15 minutes, with lots of coaxing and being brought back to task, and that is only if he is amenable to it.  We are going to be starting a program called the Westmead Feelings Program with this psychologist, and it involves the whole family.  I finally feel like I'm being heard.  Tomorrow we have a paediatrician appointment for both kids, and we have a lot to cover!

I have spent a lot of time playing with the kids at home this week, and it's actually been quite nice to have some home time.  It's definitely less stressful than going out.  After we go out as a family, I feel like I have run a mental marathon, I am absolutely shattered and in burnout and it takes me a good hour to recover.  Our new psychologist has suggested we only go out for family outings in short spurts and when we are mentally prepared, with recovery time for everyone afterwards, and I think this is a good idea.  We will be splitting the kids up more often, because they are much easier one on one.

Anyway, I know all this sounds pessimistic, but I'm actually really optimistic, because we are finally getting the help we need.  And thank goodness for that!

This is Boo all over.  She was cold at Kmart  :)

On the way to Nana Glen

That's me up there!

At the Botanic Gardens

Carmie's scary lunchtime friend

Little Nacho chilling in my hood while I work

517 + 413 Weeks

This week has been really uneventful except for Arley's meltdowns.  We pulled him off his Intuniv last week, and he had five or six brilliant days.  We were so relieved so see him happy and not tired again.  Full of energy and totally ADHD, but that's preferable to him sleeping his day away and being grumpy.  However, I kind of felt like he was vibrating on a different level, if that makes sense.  He said he was glad he wasn't sleepy any more, but he didn't like having so much energy he couldn't control.  I could feel something building, and I was right.  He had a monumental meltdown on Tuesday.  It was awful.  Heartbreaking and traumatic. He was violent and broke things.  Jeffrey and I were wiped out that evening, and so was Arley.  On Wednesday (yesterday) he had another smaller meltdown which was also pretty traumatic.  Then last night he was complaining of a sore throat, and we realised he was coming down with a cold.  He was sniffly and coughing, and he's been sick today.  I'm hoping the meltdowns were simply due to his body getting sick.  Yesterday I had him take a walk with me so we could have a chat about it and figure out some tactics to help.  He feels terrible now.  I got advice from people in the autistic community, and they told me that having a meltdown like that feels like so much rage burning you up on the inside and being completely unable to stop it.  Too much emotion for one little guy.

Carmie's week has been ok.  She has had a few nights of insomnia, including last night (she is running on four hours of sleep).  She has been quite stressed because of all of the drama of the last few days.  She has also decided to quit horse riding while we are here.  She didn't like being shuffled around between inexperienced teachers, so we are putting it off until we get to the Gold Coast.  Jeffrey took her to the mall yesterday for some daddy daughter time, and she liked that.  She needs to get out and away from Arley a bit more on her own.

This week we met up with a homeschool family at this indoor play house.  It was pretty loud, so I'm impressed the kids managed to stay for a while, but they had fun with the two girls we met up with.  Next week we are meeting up with them again at the ice skating rink.  I'm pretty nervous about that, but we have to try!

On Monday I also had our homeschooling review. It was a lot of work to get ready for, but we passed with flying colours and got a two year registration.  The last thing the AP said to me was that the sky is the limit for these two extraordinary kids.  That's so nice to hear!

A funny thing happened tonight.  I tried to give Arley some liquid cold medicine.  He doesn't like the taste of it, so I told him just throw it back.  I handed him the medicine cup and he looked at it, looked at me and then threw the medicine back, over his head and onto the wall behind him.  That is how literal he is!!  He was confused when I was completely stunned, because he did exactly what I asked.  That's black and white thinking for you!

I didn't get any photos from this week, so this afternoon I snapped some photos.  It took one shot to get a nice one of Carmie...I never quite got a nice one of Arley!