Ninja Sandwiches

An Autism Journey…

The Blind Leading the Blind

What I’m about to write is probably true for most parents in some way, shape or form. And for some parents it can be a huge barrier. But I really need to know. I need to hear from other parents as it is swallowing me and the guilt is horrible. So here it is: How on earth do we as parents, particularly parents of kids with Autism/Aspergers, teach our kids and help them through things when we as their parents have trouble with the exact same things?? How do I help my kids to learn when a meltdown is impending when I can’t learn this myself? And preventing a meltdown? Forget it! How do I teach my kids how to ask for help? Or to make friends? Not from modelling it, that’s for sure… These thoughts go around and around in my head from time to time and I really feel guilty. And when I can’t possibly take anymore sensory input (for me it’s noise and interaction) how do I explain that I need quiet time without having a meltdown?

Like I said at the start, most parents must go through similar things with their kids, after all, none of us are perfect. I’d love to hear from some parents in similar situations as I can only come up with what I’m afraid are more tactics of avoidance. If a situation is going to disagree with me I choose not to do it. In other words, AVOID AT ALL COSTS!!!

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When the Village Just Doesn’t Get It.

They say it takes a village to raise a child. I’ve always liked to believe this but how possible is this today in western society? We either don’t have enough time to meet our neighbours, or there really are good reasons for avoiding them altogether. We move away from our families in search of work, our families work for longer to secure their retirement and have their own lives and even friends can be hard to catch up with, especially the ones who don’t have kids. More and more we rely on paid child minding or long daycare with strangers that we have to put a massive amount of trust in to look after our precious kids. From what I can see, the concept of a village raising a child is about the child having many teachers in life, relationships and education. And consequently the parents get a little bit of time out. It seems to be hard to achieve this for the neurotypical child but for the special/high needs child it seems downright impossible. I guess it all depends on the level of functioning of your child in many different areas. For parents of neurotypical children they can never really understand the absolute terror and fear the special needs parent has surrounding the nonverbal child. Imagine your child not being able to tell you what’s happened during day care, kinder or school? These parents have to put an enormous amount of trust in the educators. For some of us parents who have ‘verbal’ children, anxiety and meltdowns can trigger being unable to speak, therefore unable to communicate their most basic needs. For ‘the village’ to help raise a special needs child, more must be done to raise awareness. And for that to happen, the parents need to be understood as well. It can be hard to understand I would imagine but it needs to happen if we are to move forward. For example, these issues seem to be quite common for those of our kids diagnosed with autism spectrum disorder/condition:

- poor sleep since birth; some parents will tell you it is like having a newborn for 6 or 7 years and, in some cases longer. Although there are a few parents I know whose children cannot stay awake past 5 or 6pm and sleep for 13 hours straight!
– meltdowns over seemingly trivial things but on closer inspection we find that some of these can be due to change in temperature, different people holding them, sensory sensitivities (bath time, nappy change time, changing clothes, being wrapped up or unwrapped), not being able to regulate their nervous systems, loud noises or certain pitches, textures, sudden movement, certain people, certain phrases etc.
This is definitely not an exhaustive list, and as the child gets older, these issues can become more problematic – especially in public when it becomes less and less acceptable for a child to communicate by means of a tantrum or meltdown. What we need is understanding and compassion. We are parents who do not have the luxury of socialising very often – most of the time for us it is so rare that we can’t even remember! Yes we do have things we go to but they are things like doctor’s appointments, psychologist appointments, workshops (but still feel guilty about these as sometimes you can’t truly know if they will be helpful until you get there) and school meetings or support group meetings. If it’s a family wedding one of us stays home with the kids while the other one goes, anything else we can’t go. If we deem it to be more important to stay with kids then we do. If we can’t be sure that the kids will be comfortable with someone else then we don’t leave them because ultimately we know what the fallout will be when we get home. It can throw sleep routines out for months (currently going through this) and can also undo lots of things we have been teaching them – especially at the age they are at – as it is genuinely hard for them to generalise skills from one setting into the next.

Wow, I’m exhausted even typing this out, but it has to be out there. It has to be read by family members who don’t understand, doctors who question your child’s diagnosis, the people who think your child will grow out of it, the teachers who don’t know you haven’t slept in years, the friends who stop contacting you because it gets too hard, the employers who claim to be flexible and family friendly (but aren’t), the neighbours who think your child needs a smack, the teacher’s aides who think that one autistic child is the same as the next autistic child, the kinder/school parents who don’t know what it’s like for your child to be petrified of climbing stairs to get to a birthday party and last but not least for the rest of society who expects us all to conform to a neurotypical world. Imagine if you can if Einstein’s parents had stifled his ‘obsessions’? Imagine… Inclusion is great but not without true understanding. It needs to go both ways. Mutual understanding begins at home, in the way we teach our children. Please don’t teach tolerance, teach understanding and genuine acceptance.

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Parenting… The Hardest Damn Gig Ever!

I think that I may have possibly read close to 50 books on parenting.
I remember when Mr C was 3 months old and still screaming the house down every night refusing to sleep. Then, at 6 months it was still happening. And STILL HAPPENING AT 12 MONTHS!!! Night times had become a hellish nightmare of which we could not wake up from… Because of course, we were never asleep!!!

None of the usual baby parenting stuff worked. None of it. I got a bit closer after reading ‘The Aware Baby’, by Aletha Solter and her reassurance that a lot of what he was doing was normal for a high needs baby. That then led me to the Dr. Sears website. A whole heap of stuff on a section especially geared towards the high needs baby/toddler. I thought I had found what I was looking for. At first, some of the stuff worked, particularly around sleep, but it never really lasted long enough to help. But I guess what I am getting at is that even though he was our first baby and I figured that’s just what babies did, I was still spending hours a night on the internet, trying to find ways to get him to sleep and to perhaps not be so clingy 24 hours a day. And it has NEVER stopped.

I guess that would possibly be one of the main differences between parenting a neurotypical child and parenting a special needs child. Particularly in that first 6 years, it’s constant. Especially if you tend to have a very complex little human being in your tribe. What works one day, will not work the next. The food he absolutely loves and can’t get enough of for 3 months every day, suddenly no longer satisfies him and may even repulse him. And if one of those things happens to be vegetables and fruit, bad luck. The stress and embarrassment when people hear that your kid hasn’t eaten a vegetable in over 12 months? Overwhelming. The ‘terrible twos’ actually goes for about 6 years in our case, and sometimes it’s hard to believe that you’re looking at a nearly 6 year old who melts down over the moving of a piece of furniture or changing the doona cover on his bed or his unbelievable rage over having to spend an hour at the health nurse – even after being well prepared for it AND being able to bring his 3DS, iPad, and DVD player jsut so we can get through the hour at a familiar place with a familiar person.

And that’s the clincher, sometimes with our special little people, we over prepare and then comes the anxiety as they start thinking about the situation and ruminating over who will be there and how long it will take and whether they will have to talk to anyone. Yep, it’s exhausting as it sounds. Now imagine doing that for two special needs kids. Now imagine it for three. Granted, Miss E is not currently diagnosed with an ASD but we are thinking it’s probably only a matter of time.

This post is probably a bit of a downer but I’ve had a shitty week so sometimes it will come out here. But, once it’s out, it’s out! And I’m sure there will be lots of you who can definitely relate. As a pick me up, I’m about to buy ‘100 Kisses of Autism’ by Kelly Andrews. Goodnight! :-)

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Wow… What a Week!

I’m really super busy this week so point form is going to have to do!

- All kids have been sick on and off over the past 3 weeks – driving me nuts as it makes it even harder to get out of the house!!
– Went to the launch of Real People ASD Talk Radio at Star Cinema In Eaglehawk.

- Kids were able to see a movie for the first time at Star Cinema for a sensory friendly viewing – so lights up, sound down, casual atmosphere and super comfy couches! was great to be able to do something that other families do fairly regularly. I looked over at my boys (Miss E was running around being a terror and no one cared) and they had big smiles on their faces and the tears came. No meltdowns, no leaving early, so groups of people staring. Was fantastic.

- Mr C met a major major milestone – one that we are so relieved of! I won’t go in to detail – he may read this one day!

- And finally just to finish of a massive week, Beck Kelly who organised the Real People ASD Talk Radio launch asked me if I would like to co-host with her!! Exciting week in my life! It’s a major step outside of my comfort zone and who knows if I’ll be any good. But what is driving me is what a good friend said to me today: “you can’t please all the people all the time”, and “find your heart space… if it’s something you truly believe in you can’t go wrong” and finally, “sure, you’ll be nervous… we all would be, but what an inspiration you will be to your kids”. I ended up saying yes after taking a few hours to calm myself and look within myself to see if I could do it. Thanks Beck for the opportunity, I’m really looking forward to it! The link below is to the official launch from Saturday – info will be on here until an official facebook page goes up! Thanks for reading, goodnight! :-)
https://www.facebook.com/events/302081916557284/

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Time Flies… When You’re Flat Out!

Wowee… It’s been far too long since I posted last.  But I really do have good excuses! I promise!  Filling out forms for funding, making schedules for kinder, a weekly workshop about tuning into emotions for kids, the day to day stuff, renovations, cleaning, and just because I didn’t feel like I was doing enough, I threw in a Sue Larkey seminar as well! Which, by the way was absolutely fantastic.  Probably the best thing I’ve been to so far!  I’m secretly wishing she could come and live with us FOREVER!

So, lots of things going on in our world.  We were rather shocked to discover that we are having another baby, so while we were a little dazed and confused for a start, we are definitely getting used to the idea!  I would love to hear from a few of you as to how you coped with four children with a few being on the spectrum.  I’m freaking out a little but trying hard to keep it all in perspective.  The kids all know and we figured the earlier the better as they need a lot of time to get used to things most of the time.  They would all like a brother so here’s hoping!

I would also like to know how many of you have had experiences with home schooling and any advantages or disadvantages – but please just the ones who have actually experienced it or know people who have.  I just want to be prepared should we ever need to do this.  Well, I’ve broken the ice and I guess I’m no longer stuck, I just need to keep going!  Thanks for reading and thanks for your support, means a lot.  Goodnight. :-) 

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The Rollercoaster that is Life.

It’s been a long time since I blogged last. I seem to put it off while I’m busy and then it just gets longer and longer and then it gets harder and harder for me to organise my thoughts and when this happens I’m in danger of abandoning the blog altogether. As usual we have had lots going on. Kinder, school information sessions, and less support from my support network, (which thank god is only temporary!).

So we’ve been discussing schools, the pros and cons of each but Master C has already decided which one he wants to go to so we are inclined to take this into consideration. Once he has made up his mind about something that’s pretty much it!

Master B is doing GREAT at kinder which has been a huge relief considering before the last two weeks he wouldn’t let me leave him there. However he’s not doing so well when we go to other public places where there are people. We went to a local playground and he just screamed when we got there and hid under my top for the whole time. Poor bugger. I would have left but my other two were really looking forward to it and they regularly miss out on things because of this. So we persisted but it didn’t get any better. Time for a visit to where he was assessed I’m thinking. Actually they could probably both do with an appointment regarding their anxiety.

Little Miss is doing well now that she’s better and has been playing with some kids lately so hopeful that her social skills are improving but also not discounting anything too soon. It’s not that I’m trying to be all gloom and doom about it, I think it’s just self preservation.

Our main problem at the moment is the lack of space in our house. We have only two bedrooms for us all and patience is wearing very thin. While we are planning to either renovate or sell (and buy something bigger) but it’s definitely not going to happen overnight… I would love to hear how other people deal with this problem, and how you make it work??? We definitely need to de-clutter but I still think we need more room. Well, I’m off to attend to my neglected Facebook page! Goodnight :-)

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Morning Mayhem!

Well, I have never ever ever ever been a morning person. AND I NEVER WILL BE!!! But for the sake of my kids and the routine that they crave, I bloody well have to be and I HATE IT! So it starts when the youngest cherub wakes up anywhere from 6am onwards. And all we hear fro the next half hour (if I am stubborn and pretend I am asleep for that extra half hour is, ‘Mum, bwestkist!!’. Nope not a typo. That’s how my little one says breakfast. Quite cute really. Especially when you compare it to the way my middle cherub would say that word, ‘fuckfast’. Yep. Not so embarrassing at home with our immediate family but, when out early and breakfast was on the go, (we do not attempt this anymore mind you!) I can assure you I had to tell people that he really was just saying breakfast. The look on a stranger’s face is priceless when they think they’ve heard something else!

So, ‘bwestkist’ needs to be apple muesli (baby farex) in a white bowl with ‘her’ milk and microwaved for 30 seconds and then when it is taken out, she needs to shut the microwave. It cannot be left open. The spoon needs to be one she has picked out and sometimes she needs to be the one who mixes it up. Occasionally she will want scrambled eggs (another thing that needs to be done in a particular way, and must look the same every time) but generally it is her ‘cereal’ as she calls it. Any deviation to this and it becomes meltdown central and the poor monkey refuses to eat her cereal. This is just one child…

The middle cherub must have a sandwich… a Ninja Sandwich! It must be two slices of bread, buttered, and then one side is to have peanut butter, and the other side is to have honey on it (which he has to put on). The sandwich is put together and he shows me how he wants it cut… It has to be cut Ninja Sandwich style or else! He asks for all this (which I am thankful for – he has always been able to communicate his needs when he is calm) in a newly acquired baby language where he leaves of the first letter to every word, as he pretends to be my baby. Yes he is still a little jealous of the youngest cherub… I indulge him and he usually stops.

The oldest is just as particular with his breakfast choice but I have to be careful that he hasn’t started anything too interesting or he will not stop to eat. We are hoping to bring in our visual schedule this week sometime and our menu – which I will take pics of and put them up here when I work it out. I am time-poor when it comes to learning sruff! So this is what a typical breakfast is like and it is common for there to be at least two meltdowns occurring every morning, whether it’s hands that need to be wiped every 5 mins, or a spilt drink or something tastes ‘yucky’ – (as in different!) or they just haven’t had enough sleep and are too tired. It definitely is chaos most mornings! So if we have something on like playgroup, or kinder, you can imagine that by the time we have had breakfast and it’s time to get dressed, then all I want to do is have a rest from all the mental stress!! Gotta be an easier way! And I’m not going to stop till I find it! In the meantime, I’m bloody tired! Goodnight! :-)

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The Fog that We’re In.

Oh it’s a fog alright. A suffocating, all-encompassing, impossible-to-see-the-other-side-of fog. I’d been told that it often gets worse before it gets better, and now folks, we are now here in ‘Worseville’ or as I’ve often heard, ‘Struggle-town’. Yep,I’m feeling sorry for myself, but I’ve been here before and I will get through it.

There seems to be a lot of blog posts around the internet that suggests it’s common for parents of kids on the spectrum to lose friends and even family for lots of reasons I guess. But I suspect one of the main reasons is for the simple fact that unless they’re living it, they cannot begin to understand. While I don’t presume to know why this is the case for any Autism family, in my case, it starts with negative feelings and escalates to depression rather quickly and then I isolate myself and unfortunately my family too. My negativity can be so powerful that I feel like it’s swallowing me whole. I’m at the bottom and I feel like I can’t move up, let alone out. And as much as people want to help out, they don’t know how. And what makes this even more frustrating for everyone involved is that WE don’t even know how people can help.

I also feel that family and friends can’t grasp how Autism affects pretty much our whole world right now. Maybe, in time, when we understand our kids better, have better strategies in place, and (here’s hoping!) better sleep routines in place, slowly, we may be able to re-claim some of our old life. But, until then, we’re blindly soldiering on or more frequently, blindly stumbling through!

March/April has been really tough for all of us. Meltdowns are frequent and all-encompassing. We walk on egg-shells from the moment we wake until the last cherub closes their eyes for the night – sometimes this might be midnight. Some of you fellow special needs parents may be thinking, ‘midnight?? Half your luck!’, but I can assure you we’ve done the hard yards. Mr. C still doesn’t sleep through, and his first three years were absolute hell sleep-wise. I still remember sitting through mothers groups listening to all the other mothers (except one other) talk about how their 3, 4 and 5 month old babies were sleeping through. Depressing at best, soul-destroying at worst… Mine was 2 years old and still screaming the house down every night and well into the morning unless he could sleep on top of me. I had him and an 8 month old (complete with ear-splitting night terrors) sleeping with me, it was the only way we could survive! Mattress on the floor, with the heater or air conditioner on for some noise to help them sleep. Before I go into that, (that’s a whole other blog post!), I’d better get back on track. I’m hoping that by writing these next couple of blog posts, the majority of you will empathise and think, ‘yep, been there’, and the rest of you will get a glimpse into what really happens from day to day. And I’m also hoping that some will truly start to ‘get’ why we do isolate ourselves sometimes for the sake of our kids, and sometimes just for our own sanity. I don’t want pity, just understanding. And sometimes I’d like to just be able to vent without the other person trying to ‘fix’ things. And I’ll even mention some things that piss me off!

I’m going to have to leave it there for now, facebook is calling! Next post will focus a little more on what a typical day looks like for us. Goodnight. :-)

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Blubbering Mess, Feeling Sorry For Myself, Having a Good Cry… Whatever You Want To Call It.

It seems it is all catching up with me. Seems I may even be a little bit exhausted! Still getting over this stupid cold and living with a fair bit of stress at the moment. We’ve had meltdowns all afternoon after playgroup. Heart-breaking meltdowns. It is so hard to hear your four year old say that he hates the world. He doesn’t wan to go back to playgroup at all and to tell you truth I really don’t want to make him! So for those of you that have been through this with your kids, how did you handle it? Did you end up finding out why it was so hard for your child to handle? We have been going fairly regularly to the same playgroup for a few years now but just recently it’s had a bit of a makeover where we are doing a bit more craft and making stuff and there’s been a few more toys to play with and also a few new people have come so I guess it could be all the changes. I’m thinking we might have to find something that is a little bit more predictable? I don’t know… I’m in two minds about it really. On one hand I’d really like him to gradually cope with some changes, new situations, new people etc. But on the other hand I’m not sure he’s ready for this much change. Seems I have a lot of thinking and discussing to do…

My youngest is off to be assessed on Thursday for a possible ASD diagnosis so I’m becoming more and more emotional about that. I’m worried about how she will react to the whole thing. I’m also still worrying about the possibility that I have just been paranoid and am reading into things too much. So that’s where the tite of this post comes into it. I just found myself really crying hard like I’d opened the floodgates and nothing could stop it… Only thing is that when this has happened before, I usually feel better afterwards. But this time I don’t. Maybe there’s more to come. I’m hoping I don’t lose it on Thursday at this assessment. There will be a team of specialists looking through a one way glass wall so I’m really hoping I don’t lose it!

I know this post is a bit of a downer but it’s definitely honest. We are still at the beginning with all this diagnosis business so to have a third child diagnosed will probably be a bit of a shock to the system. Yep I’m talking as if it’s already happened but I do best if I imagine worst case scenario! Cuppa and Bed for me! Goodnight. :-)

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Flat… And Missing In Action!

Ugh… Still trying to get over this damn cold… At least I’m the only one with it so far. On the upside if the kids get it they’re now on two weeks holiday so enough time to get over it hopefully. Well apart from this cold, I’m also suffering from a lack of motivation… I have a heap of questions I’d love your opinions on but for now I’m off to bed to try and kick this cold. Goodnight. :-)

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