Thursday, October 23, 2014

Meet the newest member of our family - PANDAS

Hey everyone,
I've moved to a new blogging address! You can now find me here:

If you'd like to read the latest about what's been happening in our home, especially the visit from the PANDAS fairy, please head on over and sign up to follow me at my new blog. My latest musings can be found here:

Have fun reading!

Friday, October 10, 2014

Why it's all worth it

A few days ago, we had a terrifically awesome day. Yes, it was that good that I have to throw good grammar out the window to tell you about it.

I took my 5 year old son to the first of his school transition days and he had a great time. Later that afternoon Daddy and I took him to the local playground, along with his little 4 year old brother. We all played "chaseys", taking it in turns to chase and catch each other with a big tickle and hug when someone got caught.

Those of you who have 'normal' children (is there such a thing anymore?) are waiting for the punch line. You're reading the above and thinking, "okay, that's the background, where's the good bit?"
That was it.
The above paragraph sums up a momentous occasion (several actually) in the life of my 5 year old son who has severe autism.

You see, three years ago, that very same boy would sit at a table for three to four hours, lining up little figurines and staring at them through squinty eyes from 10cm away. He paid absolutely no attention to anybody else, unless you happened to move his toys - then he would scream and move heaven and earth to put his precious toys back the way they were. He would NEVER look at your face and you could scream his name as loudly as you wanted to - he wouldn't seem to hear you.

Leaving the house was a nightmare. It would take up to half an hour to get his shoes on - most of the time I lost that battle, or just let him wear his rainboots on the wrong feet. As soon as he saw the car, he would scream, and continue screaming and flailing his arms and legs while we tried to buckle him in his seatbelt. The one with the special safety clip so he couldn't get his arms out and get out of the seat - I wasn't going to risk THAT happening again!

I avoided going in the car for months as I simply didn't have the strength for the battle to get him in there safely - and I had the bruises to prove it. Thankfully, after a while he became quite fond of the car, so we could get him in it much more easily. He then started screaming when we got him OUT.

Once the doors were opened and I got him out of the car seat, my hypervigilance would kick in. He did not hold hands or stay in his pram. As soon as he was free, he would bolt, and as he had no sense of danger, he would bolt in front of moving cars. So I would keep a death grip on him while trying to organise any other children I had with me and lock the car. Thankfully one of my older daughters would often take my younger son in his pram, or I would only go out if I had another adult with me.

Then there was the issue of 'going inside'. My boy was happy outside. He was not happy inside. He would develop claustrophobia at the sight of a hallway or a small, enclosed room. After our first appointment with the GP, we were told we could leave our son at home and just come in for his appointments without him. Shopping centres were a nightmare - people everywhere, loud noises, moving doors, too many bright objects - it was just a matter of counting the minutes until the volcano exploded.

Playgrounds were minefields. Yes, they were outside, but if they weren't fenced, I had to be prepared to do life or death sprints to stop my boy from running out on the road. We could only go to fenced in playgrounds - not so easy when most of them aren't fenced. Even then I had to be within arms reach as my over-excitable boy ran from one activity to another. He didn't understand that the child on the swing wouldn't just magically stop in mid air to avoid a collision with him, or that it wasn't okay to shake another child out of the swing because he wanted a turn.

Playing together just didn't happen. It was always solitary play - he didn't need or want anybody else to play with. Other people were just in the way, or objects to be moved around at his whim. He ignored his little brother, unless he thought he could steal some food off him. He hated physical touch like hugs and kisses - he would tolerate deep pressure if we did it with him wrapped in a blanket or mat.

We have spent the last three years working HARD to help him change all that. Yes, he still runs off - within the last year he has twice run out on the road and stood on the white lines watching the oncoming cars with glee. I still get PTSD every time I hear a car horn - the first thing I do is a mental run down of where my boy is and if I don't know, I panic. We now have a front gate that slows him down, yet I still get the shaking and fear when I hear car tyres squeal.

He loves cuddles and tickle games and graciously allows me to kiss his forehead when I ask for a kiss. He's realised that other people provide possibilities for fun, not just food. We've done gradual exposure to new environments and he is now a dream to take shopping (better than his little brother as a matter of fact). We're prepared for new, noisy environments and so far he's been fantastic.

He has started playing with toys. Not just lining them up, but actually playing with them. I've helped him dress up teddy bears and dolls and watched him set up tea parties for them (although he's not sure what to do after he's set it all up LOL). He has decided his favourite game is peekaboo and he loves nothing more than jumping out from under the blanket and 'surprising' me. His toys have to hide, too and I get the fun of finding them (as long as I do it right). He will happily hold hands when I tell him to and is much less likely to run away from me when we are out and about. He's learning to wait and take turns - small steps at a time.

So can I take you to the momentous occasion above and get you to read it with new eyes?
I took my 5 year old son to the first of his school transition days and he had a great time.
He went to a brand new place, walking through hallways, moving from one room to another, in a very bright, stimulating environment, with other kids in the room. He did not lose it. He explored the room, coming to me every few minutes for a deep pressure hug, with a huge smile on his face and his eyes closed as he enjoyed the closeness. He played in a busy playground, and came inside when I told him it was time to come in. He waited patiently when another child wanted to play with the toys set out for him, and then took his seat calmly.

Later that afternoon we went to the local playground, along with Daddy and his little 4 year old brother. 
We went to a playground that was not fenced in, on a day he had already had a lot of stimulation and new things to deal with.

We all played "chaseys", taking it in turns to chase and catch each other with a big tickle and hug when someone got caught.
He eagerly waited for his little brother to catch him and squealed with delight when he was caught. He turned around and looked me in the eyes (are you crying yet, because I am?) and SAID, "catch you". My nonverbal boy who has only been speaking for the last 6 weeks told me he was going to catch me. He then chased me down and dragged me down to the ground so he could wrap his arms around me to give me a huge hug. And we did this over, and over again.

THAT is why it's worth it.

The PTSD, the sleepless nights, the poo smeared walls and furniture, the never ending research. That constant scanning of the environment to avoid any triggers or be alert for any dangers - Autism mums are better trained at that than the Army. The screaming, spitting and throwing of food, punching, hitting and kicking that happen all too frequently. The daily destruction of anything that's not locked down - and a lot of things that are. The thousands we pay for doctors, testing, supplements and special foods, that have sent us broke.

Because it's all worth it when your little boy looks you in the eye with a cheeky grin, and says, "catch you".

Please note - I have moved to a new blogging address! You can now find me at
Hope to see you there!

Friday, October 3, 2014

Can I just stop Eating?

Am I the only one who would rather go hungry than plan yet another nutritious dinner? Let alone one that caters for everyone's food intolerances and allergies, doesn't cost a fortune to buy the ingredients for, and will actually be eaten by most of the members of our family?

I have to confess - I'm very lucky. I have two older daughters who do most of our cooking - they cook dinner three nights a week each, and a third daughter is learning on the other night. My oldest makes the absolute best steaks - I don't eat steak out anymore (ha ha, when do I get out for dinner?) as hers taste too good. Our side dishes though are totally boring - usually soggy vegetables. Trouble is, we're all too lazy to find nicer things to make, so we end up with the same old meals all the time. Not to mention that I now have an 18 year old and a 14 year old who are already complaining about how horrid it is to plan and cook dinner!

We used to do great menu plans when we were only additive free and soy free, and we even had matching shopping lists. Then along came gluten free and casein free. A bit later on, we went corn free. Now we're also free from eggs, honey and pork and are supposed to be free from tomatoes, potatoes, onions and garlic. I honestly don't know what to cook anymore!

My shopping bills keep going up - we're buying organic vegetables and fruit where we can, and buying those on the EWG Clean Fifteen list where we can't. I try not to buy anything in a package anymore, as it takes me an extra couple of minutes to read the labels very carefully - every single time, in case they've changed the ingredients yet again.

I am constantly on the lookout for ways to maximise my children's nutrition by sneaking in as much goodness as I can to what we eat. I even wrote a blog post about it here, as I have a son who lives on air most days, so every mouthful of food counts! I have a shelf full of cookbooks specialising in 'without' recipes. You know the ones - without gluten, without casein, without any ingredients you've ever heard of before?

The trouble is, that when it comes time to start dinner, I often find that I haven't prepared anything beforehand, and we end up going back to our soggy vegetables.

So, one thing I've decided to do for myself, is attend the Thinking Moms' Revolution eConference on GMOs, Organics and Food Allergies: How to Feed Your Family Without Losing Your Mind. Because I am seriously going to lose my mind if I don't do something about our soggy vegetables soon!

The eConference will not only talk about the dangers of GMOs and pesticides in our foods, but will have a LIVE cooking demonstration, as well as a guide for preparing meals on a budget and on time, and a bonus eCookbook. One of the speakers is my very good friend and fellow Australian Team TMR member, Kris Barrett. Kris was our diet coach when we first embarked on our new eating regime, and I know how much she hates to cook LOL so her recipes are always easy to follow, quick to make, and best of all, use ingredients I can pronounce the names of.

The good news for you is, that TMR have offered a FREE registration for one lucky reader! All you have to do is leave a comment below by (**Extended) midnight, Tuesday 7th October (that's 8am Tuesday 7th October EST for the Americans), and I'll get one of my girls to draw the name of the winner out of a hat.

Come and join me in learning more about the food we put in our mouths, and let's take a stand against soggy vegetables!

Please note - I have moved to a new blogging address! You can now find me at
Hope to see you there!

Thursday, October 2, 2014

Bittersweet - an 18th Birthday

Today, my oldest child is turning 18. Do you remember when you turned 18? Or maybe when your son or daughter turned 18?

I'm just as guilty as anyone of having ideal pictures in my mind of how it would be when my children grew up. Somewhere in there, the thoughts of my child turning 18 sort of went like this:

She would want to throw a huge party and invite all her friends, along with half the neighbourhood.
We might take her out to dinner to celebrate her young adulthood and this new stage in her life.
Gifts would have to be super expensive, but I would stand firm on not buying her a car!
We'd be lucky to get any time to spend with her, as she'd no doubt be busy with her friends and generally not wanting to be with us boring old folks.
We'd be watching her spread her wings and fly the coop, hopefully not too quickly, but after all, she'd have to make her own life one day.

Well, that's not what it looks like. Nothing like it in fact.

My oldest daughter has Asperger's, among some other health issues. We shelved our dreams a long time ago, but the kernel of hope is still there. She is not celebrating the day with friends, because she doesn't have any. It actually hurt typing those words - my daughter does not have any friends at 18. Not for want of trying really, but I guess it became too much of an effort after a while.

We wanted to take her out to dinner - but she doesn't want to. It's apparently too stressful to go somewhere new, and do something so different as take our first born out to dinner.

Presents were not over the top - she never asks for very much. Maybe she doesn't want to, because she knows we couldn't afford to buy it for her anyway. Autism doesn't come cheap (especially in Australia where you pay for everything privately), and her 5 year old brother's severe Autism has required us to shell out a fortune, so we're broke.

She's not ready to leave home, far from it in fact. We've been working on life skills with her for years, and are still trying to work with her on getting some form of paid employment to increase her independence. I'm expecting that to be a challenge - coping in a workplace with all those personalities, having deadlines, and just the stress of constantly being with other people. Maybe I'm worrying too much and it will all be fine?

So you can see that our reality is nothing like what our dreams were. You'd think I'd be used to it by now.

I can't leave it on a negative note - I've run out of chocolate so I need to cheer myself up another way.
My son is talking.
Big cheer and drum roll please! This is incredible - an absolute miracle, so thank you God! We're getting echolalia, labeling, and SENTENCES. Yes - sentences like, "door is stuck", "it's popped" and I even got a "thank you". He will be six next month, and we are finally hearing magical words come out of his mouth.

It may not be Friday, but FUA!!!

Please note - I have moved to a new blogging address! You can now find me at
Hope to see you there!

Monday, September 29, 2014

Cancer and Autism don't mix

Autism is hard enough to live with, but how do you cope when the Mum gets cancer? Not just once or twice, but three times, and her child is totally dependent on her for everything?

I have been following the blogs from the Thinking Moms’ Revolution for a while now. Those mums (and dad) know what I’m going through with my own kids, and they are determined to help them despite the naysayers. One of the blogs that really grabbed me was about Autism and the Church, written by Booty Kicker. Attending church and following our faith was a big part of our life, until the Autism monster exploded in the middle of it.

When you have a child that cannot sit still for more than a minute or two, church is not exactly a comfortable place. If your child insists on verbal tics and vocalisations in the middle of prayer, you get strange looks. Other children feel like they’re missing out if your child is sitting there, plugged into their iPad or portable DVD player (and the parents don’t look too impressed either). Chasing your child through the rain or searing heat while everyone else is sitting inside listening to the sermon, doesn't exactly imbue you with the right spirit. Then there’s the issue of fellowshipping over a meal – something else that became impossible to do because we are on a restricted diet.

So I stopped going and stayed at home with my son while my husband took the other kids to church. Booty Kicker (Melanie Baldwin)’s post really helped me to know that it wasn't just us going through these issues. There are hundreds, if not thousands of families out there who can no longer go to worship at the House of the Lord. A lot of us felt a kinship with her post and a sense of relief that it wasn't just us.

Now, Melanie has once again got cancer. She’s already beaten breast and bone cancer, and has recently been diagnosed with spine and liver cancer. Her son Luke is severely ill and needs constant attention – like many of our kids he injures himself due to his autism. Autism doesn't come cheap, and neither does cancer, and how do you replace a mother who is battling for her own health?

Her family needs your help. Please make a donation, so that her family can continue on while she is not able to be with them. Pray for Melanie, her son Luke, and her husband Tim during this time of need. Pay it forward!

Edited 7th October 2014 - Melanie has passed away and is now resting without pain, in the arms of her Saviour. Her son still needs constant care, and her husband will have to try and take care of their sweet boy while still grieving for the loss of his wife. Please pray for this family to be able to work their way through their grief, and for the continued care of Luke. Please give if you can.

Please note - I have moved to a new blogging address! You can now find me at
Hope to see you there!