Something feels strange…

Mr 10 has lately taken to saying to me very often during the day that he is bored. Strangely when I offer him a whole list of stuff to do, he declines with great pre-teen gusto and disappears into his room (not to clean it as I had suggested!). Great chunks of his day are spent on his tablet doing who knows what (don’t fret, I actually do know what and it’s not that exciting!)  and building and designing Lego. So when it gets to bed time, he often heaves a great sigh and says “mummy, something feels strange”. 

“What sort of strange?” I ask, knowing full well that this kid has so many emotions in him all the time and that he feels them at 600 times the strength of regular people. He will answer that he doesn’t know, so I prompt him.

“In your head? In your tummy? In your heart?” He often points sadly to his heart. He has a big one. A sensitive one. He finds it hard to hold it all in there. I guess that would feel strange. He thinks too much for a kid, always has. Big thoughts in a little body. That’s why he used to be so intense all the time. We usually can isolate what in particular is getting him that day and I can talk him through it. When he says he wants to play with kids, I can remind him that he now has a couple of friends he sees and talks to. He is making friends at scouts. He finally has a peer at OT to interact with and he even has a ‘girlfriend’ that he talks to on the phone and plays Minecraft with! So that part of his life is really coming along. Just slower than he’d like, but I also remind him that whenever I suggest attending social groups or excursions during the day with other homeschoolers, he refuses to go. He needs to be patient with the process I guess.

He did rather amusingly come to the conclusion on two recent bed time occasions of “big feelings” that what was wrong was actually that he was hungry! That made me laugh. That one was easily fixed!

We are trying to get more exercise and cut out sugars and fats a bit as he is gaining weight on his meds and I was told by my doctor recently that my blood pressure was too high and I need to lose some weight. So no more wine after the babies have gone to bed. Sigh. One glass of wine and one bowl of chips every night seems to make a difference to my sanity, but also negatively to my weight. Well it is working cutting it out, so I guess I’m happy about that. At least I have a new thing to distract me. I am the lead singer of a newly formed (as of Monday) rock band called “The Klaymores” yes, like the Celtic sword, but with a K coz I am K not a C girl.🙂 we will have our debut performance on Dec 2nd 2016! Exciting!

Mr 10 is off on Thursday to play laser skirmish with his scouts group so let’s hope he enjoys that. He really is getting better at dealing with those kinds of situations, although he does still just want to leave when it gets too full on with noise and competition and stuff. The good news though is that at least he goes and tries… Oh and that he no longer tries to kill all the people in the room with whatever he can find lying about…or words. 

He learnt a very valuable lesson the other day. He was playing Minecraft with his girlfriend online and she wrote the word ‘Fak’ I the chat. He got quite upset and came to tell me that she was swearing and so he was shutting everything down and wouldn’t play with her anymore. I suggested to him that it might be better to just ask her to lease not swear on his server if he didn’t like it. He did ask her and she argued that she hadn’t swore, she had just written Fak. He was mad at her and shut down the server. I suggested that rather than getting mad like that, it might be better to have a proper conversation with her about it and talk it through. To my utmost surprise he picked up the phone straight away and called her! 

Mr 10 “Hi, it’s me (Mr 10)…yeah I just wanted to tell you that I understand that you only wrote Fak, but to me thTs the same as swearing and I’d really like it if you didn’t do that on my server please.”

She responded, but I couldn’t hear what she said.

Mr 10: “oh. Thanks, that’s great. Yep I’ll go and turn the server back on so we can play”

Yay! He learned that communication is the biggest key to any relationship! He took charge of the situation, let her know he understood her position then told her what he expected from her when on his server. I was so proud! Now we just gotta work on him not telling his baby brother that if he continues to scream in the car he will put his hand over his mouth until he shuts up!! 

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Babies be Crazy!

Well you all know we have this beautiful little 17 month (today!) old baby. I say baby, because compared to our Mr 10 at this age, he really is a baby. By 16mths, our older son was already talking clearly and stringing words together into coherent sentences. He knew all his colours, animals and their noises, shapes and was pretty close to knowing his alphabet! We now know of course that this is not ‘normal’.  That’s cool, regardless of how ‘gifted’ or whatever Mr 10 is, he has other issues that stop him from reaching the potential of his big brain in the current societal constraints in which he lives! But back to Mr 17mths….

So Mr 17mths definitely says a lot of words and he’s a fantastic communicator. He gives you a few words and actions and points and makes relevant noises and with that information you basically get a whole story out of him. It’s kinda cool. However… he also does a whole bunch of stuff that Mr 10 never did. Like banging his head on stuff…deliberately…repeatedly! It’s crazy!

If you say, “no” or take something dangerous away from him, or him from it, he arches back and flings himself forward to headbutt whatever he is near! He’s headbutted the concrete steps at the back of our house, the kitchen bench, the floor, us, the dog, a tree, his high chair, the fridge, the pantry, the microwave, washing baskets, a guitar… you get the idea. This means that we are all on the lookout and worrying for his head. He has bruises all over his forehead and face from the things he butts. Crazy. We are working on not reacting big, just trying to remove him and put our hand in the way so he doesn’t damage himself. We say “no bang” because he also tends to fake the motion and say “bang” to let you know about it. We say, “if you bang, you will go to bed.” That worked for a while, he really didn’t like me putting him to bed after he’d headbutted something. I just hope it’s one of those phases we just have to get through.

Another crazy thing he does is launch himself headfirst around the place. For example if he climbs up something (an activity he does a lot, on anything and with great skill), he might just turn around, let go and dive off head first! Now he’s definitely not a “slow learner”. We keep getting comments when we are out about how clever he is and how many words he has and how quick he understands things… but really… we have to have someone follow him around continually with hands at the ready for when he decides to launch himself into dangerous positions! Let me tell you that is very hard work!

On the positive side, there are definite differences I can see in Mr17 mths which give us hope that he doesn’t have similar difficulties to Mr 10.

  1. He is definitely capable of self calming and when he decides to sit down, he can actually stay still. Mr 10 could never do that at any age, until he was medicated.
  2. He really listens to you when you give an instruction and he can actually follow a string of simple instructions through to a conclusion. Mr 10 still struggles with this.
  3. He loves cleaning up! He will pack up stuff he’s played with, wipe up stuff he’s spilt, get the broom out to sweep stuff. Naturally not always, and he’s not very effective at it yet, but he does it and that’s awesome! Mr10… not so much. Ever. This could just be a personality trait though rather than specifically connected to his ADHD or ASD.

On the whole, it’s really lovely having a baby again, but super duper hard work. Particularly at the moment when my husband is launching a new business and working late into each night and having to go away for work and conferences and what not. It means I’m on the go all day and sometimes a lot of  the night too, but hopefully once the business is launched things will really settle down and we’ll all get a lot more time.

For now, enjoy some pics of my crazy boys!

 

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Quote of the day

We had just got back in the car after swimming class. Mr 10 was looking at Mr 16 mths who was falling asleep (swimming is hard work when you are that small!).

Mr 10: “My life is different now. It’s really full of a lot more cute. I mean, since I have only one brother I do have a bit more worry, especially when he does things that might hurt himself. And my life is a little harder, but mostly it’s a lot nicer and he is just so cute and I love him so much.”

Awwwww……..

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A long journey

WordPress reminded me today that it’s been FIVE years since I first started writing here. Wow. Five? Crazy. I can’t believe we’ve been sharing this journey with our 10 year old son for that long. It made me think I really should find some time to catch dear old wordpress (and anyone who reads it) up.

My phone broke last week. That’s always hard to deal with. I really liked that phone. I’ve had to succumb to a more modern larger one. I had to wait to get it. I now have to wait for a new SIM card because it needs a nano one. Sigh. Bigger phone…smaller SIM card. Annoying.

I don’t have photos of my boys this week because my phone broke. I also might have lost a fair number of pics in the depths of the phone that didn’t save to my SD card. Sigh.

However…. Mr 10 is on a new medication called Abilify. Yes, it’s in the same kind of category as many of the others he’s tried, but he just really needed some help. I am still homeschooling him, so that is fine with ADHD, but the depression and anxiety and sadness he was experience was just too much. He needed help. He has it.

The difference in him is extraordinary. He’s so much calmer, happier, better able to stop and take stock of his emotions, this allowing us to step in and help coach him in ways to deal with them appropriately. He was desperate for some friends, and now with the medication he actually has a chance of making some finally.

He has attended two Scouts meetings recently and the first time he lasted 1 hour, but only because he got tired when his meds kicked in and the fact that he actually participated for the whole hour! The second time he stayed for the whole 2 hours! He even said he had had fun. Wow. I didn’t get any phone calls or emails the next day asking us not to bring him back. That’s pretty much a first.

He has had the opportunity to play Minecraft a few times with the 14 year old boy who lives across the road, and that’s quite lovely to see them chatting and having fun together. The older boy keeps forgetting that our son is only 10 though, and that’s quite funny too.

We still have a major hurdle and long way to go with his attitude towards school work or learning in any official capacity. I think the years at school just traumatised him so much that he just still really has a mental block when it comes to anything that might resemble schoolwork. It’s definitely taken to a dysfunctional level. For example, I came home recently with a couple of boxes of interesting science experiment kits from ALDI. When he saw the boxes he was immediately interested and wanted to do them. I said we would wait until tomorrow because they would be great to do as science and count it as science work done. His face changed instantly. He pushed the boxes away and said they were boring and he wasn’t interested if they were for learning! The very same boxes that he would have torn into and done with great happiness if I hadn’t linked it to learning! Argh. So frustrating. I haven’t been able to get him to be interested in them since.

The only thing that can be done is to take everything very slowly and cautiously. Not push him too fast or too hard just because I can see the potential for improvement. It’s excruciating. Especially when I know he’s so clever and personable and so capable if only.. if only… Well it’s a long long journey with these special kids and thank you to WordPress for letting me share the next 5 years with you all.

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Moppet

This gallery contains 11 photos.

Originally posted on dogs of sydney:
“Moppett is a 6 year old Groodle who was very carefully chosen as a companion pet for our eldest son who is on the autism spectrum. My husband and I were not officially ‘dog’…

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Stuff and More Stuff

Wow! Ages since I last posted anything. Why? Well, crazy… lots of crazy! My baby started walking at nine months old and he’s quite mental. Walks, falls, smashes his head. Climbs the oven door, out of the high chair, out of the walker, up the back of the lounge and now out of his cot!!! Argh! Basically it means we have to have one of us on him at all times. He needs to be followed, tracked and grabbed or he just crashes and breaks himself in one way or another!

Mr 10 is having suicidal episodes and really struggles with stuff at the moment so that’s quite hard work. He is up one minute and really really down the next. He is back to throwing tantrums, although not as bad as he used to. Still, it’s hard work. Take today for example.

He does a trampoline class that has been moved to Tuesdays. I try to arrange every second week to take him up to the central coast to visit and play with his ‘cousins’, (actually they are my husband’s uncles’s children) and give him much needed peer contact and practice socialising. Probably about 1 out of 4 of these organised days gets cancelled due to the kids in question being ill. They go to regular school,  and there are three of them, so it’s bound to happen! Unfortunately, Mr 10’s autistic aspects really can’t deal with this change of plans. We couldn’t go last week as they were sick, then the play date was cancelled again this morning as the youngest brother became sick. I did all the necessary emotion coaching required around telling Mr 10 that we couldn’t go. He didn’t really cope.

He kept asking me all day to text and check if the sickness was better now and could we still go. This continued right through his trampoline class every five minutes asking me to text. I kept explaining patiently, that it was not the socially acceptable thing to keep asking when the answer had already been ‘no’. That people find that quite annoying and intrusive and it’s just not appropriate. I also kept emotion coaching him that I understood this was frustrating, disappointing and difficult for him to accept. Finally he had enough and left the trampoline class. He went next door to the out-of-bounds baby play area. If he keeps doing that, eventually they’ll just say he can’t come to the gym anymore. That will end up being another activity he gets thrown out of and I can’t take him to.😦

I got him out of the area calmly. Then instead of going to the car, he decided he was going to walk to his cousin’s house by himself. That being said, he left. No shoes on. Just walked up the road by himself without me. I can’t chase him, I was carrying the baby and a heavy bag. I got in the car, strapped the baby in and drove off to try and find him. Fortunately I managed to get him to get back in the car. I patiently explained why that was not safe and not OK and that he can’t just do that despite having all those feelings. He didn’t care. He insisted that I drive there right now. I ignored him. Repeatedly. For 20 minutes.

He then threw a water bottle at my head and insisted that I turn around as I was going the wrong way. I ignored him. His baby brother sat silently watching.😦

Finally he realised I wasn’t going to give him what he wanted. He asked if he could go for a bike ride to calm down instead. I agreed, but his Daddy had to go with him. Daddy is home a bit more at the moment as he was recently made redundant and is contracting at the moment. He returned from the ride much happier and ready to do the lines I had set him for breaking the rules. Fifteen times of “When I have big feelings, I still need to follow the rules.” He hated that statement. But he wrote it out fifteen times. Then he did all the schoolwork for the day. And he was very well behaved all the rest of the evening. Argh.

Hard work at the moment. I can’t get him to go to the social homeschool gatherings at all. He hates being lonely and wants friends, but he was even preparing to tell his cousins off for losing interest in his current obsessions and not wanting to play those games with him! Most kids won’t tolerate that. Rightly so.

He’s also had a number of good and bad run-ins while on holidays and out and about generally with people. More bad than  good lately, and I’ve found myself apologetically stepping between him and an angry parent or two saying, “sorry, he doesn’t mean it, he can’t help it, he has autism”. Usually the parent will then simply remove their own child and I see them whispering and talking and looking at us. Sigh. I don’t care. And I care a lot.

Sometimes my mum will say stuff to me like, “why don’t you try telling him this, or that, or try to get him to try this or that?” and it makes me feel like she thinks I’ve never explained to him how people expect him to act. Of course I’ve explained that it’s not OK to be rude to your grandparents. Of course I’ve told him not to run away. Of course I’ve told him over and over that schoolwork is important. He doesn’t learn from what I tell him. Or if he does, he just can’t bring that lesson back up in times of anxiety or stress. I pick my battles, and to other people, including my husband it may look like I don’t battle him on anything at all. In reality I actually battle him on almost everything! I just don’t voice it out loud or my whole day, my whole life would battling with him.

So, I am in a bit of an unstable area at the moment. That’s not too bad though as I am tough. Mentally and emotionally. I keep going. I quietly fight with those who think I’m not doing things right. I keep going because there is no other choice really. I keep trying. I keep finding new things and I keep myself if order so that I can support those around me who struggle with Mr 10 more than I do. I step in carefully when needed, but still try to allow them to learn. Yes, it’s tiring. It’s hard. But I do it. I’ll keep on doing it.

I can only hope that one day we’ll get the right mix of medication and therapy that will help Mr 10 to really settle into his life and himself. I try to focus on that even though I also find myself preparing to find him one day having followed through on his threats to kill himself. Why do I do that? Because he’s impulsive. He has a mental illness and there is a real possibility that one day when he’s in his teen years, he may just make the wrong decision and do it. I can’t watch him so closely as I do now, forever. All I can do is keep working now to make that less likely.

 

 

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Holidays with a kid like mine

Happy New Year! We’ve had a couple of nice little mini holidays this year. We went to the Hunter Valley Gardens and enjoyed the light show and fireworks with a one night stay over, and on Friday we returned from a two night stay in the Blue Mountains.

When we holiday with our Mr 10, we know that we can expect certain things.

  1. He will talk to everyone he meets… about everything
  2. He will roll around the hotel like a crazy person
  3. He will complain about the food, about walking and about any places of interest we’ve arranged to go to….until he gets there and then he’ll love it…with embarrassing over enthusiasm, loudly and then talk to everyone he meets about it.
  4. He will do something every day that gets him trouble with us. Not just regular kid stuff, we are used to that. He will do something that is really really annoying and frustrating.

So our Hunter Valley trip went really well. He did all of the above except perhaps for number 4. At least, if he did do anything really big, I can’t really remember it now! He did get into lots of ‘little’ troubles by being rude, and running away and getting overexcited though. It was new years eve so it was kinda exciting. We understood. He still got fairy floss and popcorn and in the end he had a really great time. His parents however, were exhausted because the new little Mr 9mths is really not good at being out of routine and away from home. He doesn’t sleep. He screams. He needs to be rocked and shushed and this needs to be done multiple times throughout the night! Arggh!

Our recent Blue Mountains excursion looked to be a washout at first as the weather was very stormy, misty, rainy and cold. Since we were going to stay more than one night, and since the husband wanted to play golf, we booked the nicest hotel we could afford so that I would have a nice base to stay at with just me and the boys while he played golf. We chose a great resort on a golf course that had really great facilities for kids and was a four star into the bargain. Mr 10 is like me and really loves hotels, so the choice of a fancy one is quite important as he likes to spend time in the room. The first day was taken up with staying at the hotel due to the awful weather, but at least on the second day it fined up a bit so we could get out and explore some. I always love the Blue Mountains, it’s one of my favourite places and I’d happily live there if I could.🙂

So Mr 10 did talk to everyone continuously and all the staff knew him well by the end of our stay. He insisted on doing a lot of their jobs for them like pushing the luggage trolley here and there, and complaining about things that he thought weren’t quite right. He had a great time in the kids room, and I’m getting better and accepting that if I overhear parents whispering, or kids talking about ‘some weird kid’ or something strange going on, that it’s likely about Mr 10 and that I need to either go in and do something about it, or just let my heart rate settle and remember that I don’t know these people and they don’t know me! I am getting better at the latter now because I was also dealing with Mr 9mths who wanted to be in the ‘baby room’ so I couldn’t keep as close an eye on Mr 10 as I would normally!

So the number 4 that he did on this trip was a doosy! We were all finalising our dressing up to go out to dinner on the second night and Mr 10 was playing around with the hotel safe, something which always fascinates him and he doesn’t usually cause trouble with because he is good at remembering the code he makes for it. We are just about to leave when he confesses that he has forgotten the code to the safe. I asked him what was in there.

“Your Kindle, a muffin, my GoPro…. and the room card”.

Sigh. Not just ONE of the room cards! BOTH of them! So we fiddle around for a while trying to get him to remember the code, but he must have hit the wrong button as he had closed the wardrobe door and squashed himself in there to play with it (as I had just told him to stop playing with it!). So we were stuck. Finally we sent him to reception to find out if they have a way of opening the safe. They sent up a maintenance man who did it for us and we were on our way! Big Trouble! We were now an hour and a half later than we had intended to go and eat and the baby was whinging because he was tired and hungry!

There were a few other moments where I had to bring him back on track when around other kids in the play room but overall it was still a good little mini holiday. I think we’ll have to continue with mini holidays until Mr 9 months settles down a bit because we ended up having him in our bed with us as he woke up so often! We can’t be doing that for too many nights in a row! Phew! Hard work with not much sleep!

We are looking forward to happy and busy new year though.🙂

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