Losing dread, finding joy

Dread : to feel extreme reluctance to meet or face something.

I used to really dread the school holidays.

The thought of having the kids home every day made me want to hide under my blankets and stay there until they were over and I knew that the possibility of having a peaceful household was all but gone for the duration. Often the constant drama that continually unfolded was usually more than I could take and I would spend the days wishing for school to go back just so I could get a moment’s peace. I regularly locked myself in our walk in wardrobe with my iPod turned up loud JUST to drown the kids out. It was the only way I could cope.

But that was then.

THESE days, I understand the reason behind the tears, the tempers and the general unrest (well…MOST of the time anyway) and can usually take some measures to try to avert them before they occur. I have learned that dread is a very close cousin of fear. I no longer feel afraid and therefore no longer feel the need to sit in the corner in the foetal position rocking and chanting “It will be ok, it will be ok, it’s all going to be ok” until I finally started to believe it.

***

Today was the last day of school for my kids for this term. They are now on holidays for almost 3 weeks and this time – I couldn’t be happier.

20 days of stress-free mornings, 20 days of not having to be anywhere at a particular time and 20 days of semi sleep-ins. (Well – 6:00 am is a sleep in here )

Many people think that children on the autistic spectrum need rock solid routine and while that’s true on some levels – my kids cope ok with only a loose routine provided that they are not rushed or expected to be something that they’re not.

The more “out” activities – the more stress. It’s a simple formula really!

I used to take planning to the tenth degree and schedule holiday activity upon activity thinking that they needed that structure to cope, but in essence – what I was really doing was over scheduling them and kind of replicating school – they very thing that they were supposed to be on holidays from! The expectations that I put on them was causing all of us so much stress that it hardly seemed worth it in the end!

They got so tired from having to be here at a certain time and there at another when all they really wanted to do was to just chill out at home with a DVD and their favourite things surrounding them.I discovered that play dates are great – but not when they turn into another “requirement”.

And now that I know all of that – I can also relax more easily. It turns out that they don’t WANT to be traipsing around parks, bowling alleys and cinemas all the time. They are completely happy to just stay at home and do their own thing. It’s easier, MUCH cheaper and allows them to actually benefit from the break by recharging their batteries and refuelling so that they can cope better with term 3.

My beautiful Mum is arriving next week and both of the boys birthdays AND mine are also coming up so we still have a LOT to do this holidays.  I’m very excited and have just started to see the light at the end of the so-I-guess-I-don’t-get-to-move-to-my-mum’s tunnel.   And that light is in Ella. She has really blossomed this year and her and three other lovely girls have joined forces and created a lovely little group.

image blurred because I won't put other people's children faces on the internet

The group is made up of two 12 years olds & two 11 year olds so it’s a great mix, they all complement each other brilliantly and are as different as they are alike. They all Skype each other EVERY afternoon after school and have already planned 2 sleepovers in the holiday period. It’s ALL they talk about and their excitement is contagious plus it’s making this mothers heart sing after the horrible bullying that my princess has had to endure in past years.

I couldn’t be happier.

And as much pain as I have been in recently as I have witnessed my dream of moving home become less and less achievable – I have found a way to rejoice in the beautiful friendships that my girl is developing and I’m relaxing into the knowledge that she is going to be A-OK as she heads to high school next year.

It’s true that God works in mysterious ways and that His ways are not our own, but I also think that sometimes I need to just pull my head out of the sand long enough to observe the sun shining all around me instead of just noticing the dark shadows that it causes instead.

Happy holidays everyone

Fi xx

I love a bit of randomness

Let me tell you about my good friend Nadia.

image from my.opera.com

She is one of my closest friends and the story of how we met still makes me smile every time that I think about it. It was a sunny February morning and I was sitting down drinking a coffee at McDonald’s while Harley played on the equipment. Lucas was still only a baby and was sitting in the pram smiling at me.
It was a great morning.

I noticed a petite blonde woman with a beautiful face sitting a few tables away in the cafe and she was also watching her children play.
We were the only two people there and we exchanged glances and smiled and went back to drinking our coffees and watching our boys play.
I remember thinking how stylish and classy she looked and glanced down at my baby food stained shirt and too tight jeans and was embarrassed at how I measured up next to her!

After about ten minutes I had figured out that she was the mother of 3 boys and that blew me away! I will still in the midst of not knowing WHAT THE HECK was wrong with Harley and I couldn’t wrap my head around having three boys.

Well Harley and her youngest boy Jack were about the same age and had started playing together. (Well, in hindsight, they weren’t really playing “together” but Harley was copying Jack and when you are only 3….this doesn’t really stand out as an issue).

Our boys playing together seemed to me to be the perfect opportunity to break the ice with her so I asked her how old her boys were. Immediately her face lit up and she started talking animatedly about her treasures,
At the time the boys were, (I think) 8, 6 and 4.

Her eldest son has the same name as Lucas (his real name) so we laughed about that co-incidence and I told her about my Ella who was still in infants school.

Her story was as heartbreaking as it was fascinating. Her husband had just recently joined the army and they had only moved here a few days earlier. They were staying in a motel across the road from McDonald’s and they were waiting for all their furniture to arrive and the house that they were assigned to be ready.

She had left her small town that she and her husband had grown up in and was thrust into this big scary capital city. I remember feeling the exact same way when I moved here.

We bonded over our similarities and our love of country town folk. I warned her that not everybody would be as friendly as I was and told her not to take it personally.

By now she had pulled up a chair at my table and we were chatting like we’d been friends for years. We talked about everything from children to cooking to schooling and everything in between.

She ooed and aahed over baby Lucas and I gushed at her extremely handsome little blonde men.

We exchanged mobile phone numbers and after a couple of hours (which seemed like only a few minutes) we realised that we were going to be life long friends.

A few days later I sent her a text message wishing her boys the best of luck at their new school and we organised to meet up for another coffee the following week.

Anyway, Sunday arrived and I was floored when we went to church and Nadia and her family walked in the doors! We both spotted each other and cracked up laughing.
It was funny because never once during the conversation had we exchanged information about churches!

It did come up that I was a Christian and she had told me that she and her husband had been youth ministers in the small church that they had just left but I hadn’t told her anything past that.

Our husbands met and hit it off instantly and we started meeting regularly for family get togethers , BBQs, dinners and would show up unannounced at each others houses often.

I have to add with a giggle that Mr Patient struggled with this for a while being the born and bred city boy that he is….it isn’t the usual done thing here…you ALWAYS call first! But not in the country….it’s usually always spontaneous.

Anyway, it’s now been almost 5 years since we met and they have been moved on twice. They are now in their 3rd Capital city and are hundreds of kilometres away from us but we haven’t lost that initial friendship spark. I would still count her as one of my closest friends.

I got a surprise phone call from her last week and we picked up where we left off…..She was amazed that Lucas will be 5 in a few months and I was floored that her eldest is now almost a teenager!

***
My Grandmother on my Mum’s side was known for doing odd things.
One thing that has gone down in family history is the time that she spent half an hour chatting to a wrong number on the phone and comparing stories about their grandkids, baking and life in general

And today my Mum was telling me that she met her friend Cheryl for a coffee…..

I asked her who Cheryl was because it’s not a name that I have heard her mention before. She laughed and told me that she is a lady that she met over the phone.

There is a hairdresser in Mum’s town who has a phone number that’s very similar to Mum’s and Cheryl rung up to book a hair appointment.
Mum gave her the correct number and they started chatting.

It turns out that Cheryl was new to town and had just moved to town and hadn’t yet made any friends so Mum invited her out for a coffee.

They have been friends for a few months now and have met 3 times for coffee. They have found out that they have a LOT in common. They both love quilting, they are both Christians and Cheryl is looking for a church and they have an amazing connection. I was so happy for Mum AND PROUD OF HER!!

I think all these spontaneous friendships are awesome and if you’re wondering how I’m going to link all these random stories to my blog…..I will tell you now

Since I started blogging, I have RLF (real life friends) try to warn me away from those freaky internet mothers.

Funny I know but these are all well intentioned.

And yes, I think that you need to use wisdom when you are putting your and your families lives out there on the world wide web but I have made some of the most AWESOME friends through blogging. It’s not only therapeutic but it’s connecting with real mothers who are walking the same autism road to the same odd beat.

And just as I didn’t know Nadia from a bar of soap when we first met, my Grandmother didn’t know her wrong number caller and my Mum didn’t know Cheryl……
If we hadn’t have taken a risk and reached out….our lives wouldn’t be as rich as they are now.

So thank you bloggy friends. You are all priceless and I’m proud to be running this race with all of you

Fi xx

So….how was it?

Last week when I flew back home to spend the week with Mr Patient, I was expecting to walk into a complete disaster zone.

Our house was less than tidy when the kids and I left for Mum’s all those 5 weeks ago
At that time, I was exhausted, over it and really couldn’t bothered doing anything about it. I just wanted a break.

So imagine my surprise (and delight) when I walked from room to room in our home, only to discover that Mr Patient had worked his tail off remedying all this!

The baskets of un-folded clothing were now folded and sitting neatly on the children’s beds that were now made!

The carpets were vacuumed, the bathrooms sparkled and the tiles in the rest of the house shone from the cloudy ammonia scrub that he had given them!

I was so impressed!
And when he told me that he cleaned out the fridge and freezer as well – I simply couldn’t wait to see it.

I opened the fridge door and just about split my sides laughing!

It was the epitome of a man who has been living the bachelor lifestyle for 5 weeks…..all the “necessities ” were there.

Ham, butter, eggs, a tin of pineapple pieces and beer.

And that was it!

The freezer only contained 4 microwave TV dinners and ICE cubes LOL!

*

The next morning, he walked into the bedroom with a boyish smile covering his face and excitedly took me by the hand to show me his creation that he was SO proud of.

He made a “sun” out of gluten-free crepes and strawberries for me with freshly squeezed orange juice….jealous anyone?

After breakfast, he told me to go and relax while he did the dishes.

So I did!

*****

We spent the next few days window shopping, having “real” coffees together at coffee shops and going to movies.

On the Wednesday, we travelled to Sydney to stay at the Hilton Hotel….which was quite a treat for this country chick!

It was an amazing the view from our window on the 29th floor….thankfully I’m not afraid of heights!

That night, we went out to a posh restaurant on Sydney Harbour overlooking the Opera house.

One of the few times in my life that I've actually dressed up!

We had a gorgeous waiter with a French accent who kept re-filling my wine glass..eeeek!

I had to ask him to stop as I was quickly losing track of how much I’d consumed…..Mr Patient thought it was hilarious!

The dinner conversation was a reall hoot too~It centered around waitressing stories from my past.

Mr Patient knew that I’d worked in hospitality for years, but it was all before we met so we never really had a need to talk about it before.

I worked in restaurants in various roles for quite a few years, doing everything from waitressing to managing , to being a coffee Barista to a hostess.

One time, when I was employed as a door hostess at an exclusive restaurant in Brisbane, I got a warning “red card” from my employer after being caught asking patrons if they wanted to sit in smoking or “passive” smoking?

Another time, I got a severe talking to after throwing a fork back at a customer’s head after he threw it at me to get my attention after I continually ignored his finger clicking.

I remember haughtily telling the customer to “use his words”.

I never expected that years later I would be using those same words in a completely different context with my own children!

(For all you Northern Americans and Europeans reading this who are wondering how on earth I managed to get a decent paycheck being such a feisty young thing, let me explain that here in Oz, we don’t rely on tips to survive!)

Tips are rare here and waitresses get a decent enough wage already.
…..Well….not decent but when you’re 18….at least its money!

****
On the Thursday, Mr Patient and I went to the Powerhouse Museum in Sydney which was fantastic.
They had an ABBA exhibit and an amazing… 1980′s one as well!

I giggled to myself as I played “spot the aspie” all over the museum!

My favourite was a young man who was probably only about 16 years old, with the tell-tale awkward stance, deadpan facial expressions and quirky dress sense who came up to us in the 80′s exhibit while we were answering questions to a music quiz on one of the interactive displays.

We  got caught up in his long monologue about Duran Duran and the Australian music scene from the 60′s throught to today , and Mr Patient and I gave each other a knowing look and smiled and nodded in all the appropriate places.

Gosh he was adorable!

It truly was an amazing week.

Therapeutic, relaxing, teaching, enjoying and most of all….healing.

Thank you Mr Patient….. I know that we are going to be A.O.K…

The world through Harley's eyes. An Interview…

Well, since Harley has been home from school the past few days because he is unwell, I decided to take the opportunity to “get inside his head’ and find out some more of what goes on in there.

My precious little tiger Harley..

The results were both amusing and surprising!

Here is my interview with Harley:

***

“Hi Harley, can Mummy ask you some questions for my blog?”

H: ” Ok, but not too many ok, I don’t want my brain to hurt”.

Me: (stifling a giggle and putting my serious face on) “Ok, sure mate”.

“Right – question 1: “What is your favourite colour?”.………..“Black”.

2. “What about your favourite book?”………..“The Monster at the end of this book”.

3. “And your favourite T.V. show?”……………“Sonic Underground” (rolls his eyes like I’m silly for even having to ask that!)

4. “Now tell me , what is your favourite Movie?”……...”Toy Story 3″.

5. “Can you tell me what Aspergers is?”…………”No, but you and Dad say it makes me special”.

6. “Do you think that you’re different to the other kids at school?”.……….“Um, no but yes”.

Me: ( smiling thinking that this is going to be interesting!) ” OK, what do you mean by that?”

H: ” Well, no because *Tahlia in my class is an ‘ice-burger’ (sic) too and yes because everyone else is not”.

Me: “oookkaaaayy!” ( giggling)

7. “ Why don’t you like to look in people’s eyes darling”……..”Well, because it makes me scared. Some peoples eyes are too bright and some peoples eyes ask me questions and I get confused and I forget what their mouth is asking me….Also, They make my eyes all prickly”

(This particularly interested me because of my friend Laura describing making eye contact herself as an aspie in her blog as “scratchy”…)

8. “And noises…. why do some noises upset you?”……” Because they make me angry and I forget what I was thinking and then I have to go back to the start of the thought and then people get mad because I go too slow for them and then they ask me another question before I’ve even answered the first one”

(Very animated hands here and lots of raised eyebrows- this is obviously a very big issue for him)

9. “So what makes you sad?”………….”When I don’t have my teddy with me at school, and when I get into trouble for doing what  *Jacob tells me to….And sometimes the teacher makes me answer questions fast and I can’t , because I can’t think that fast and then I feel all squidgy.” ( big sigh and sad face).

I then realised that I needed to quickly take his focus of the sad things and move him onto happier questions…..

10. “It must feel good to talk about that, now, can you tell me what makes you happy?” ( putting on a huge smile and talking in a high pitched “fun” voice)………..“Yes” ( his face lights up again)….” I feel happy when you let me play the Wii or my DS…..also when you pray for me at night  and when Lucas plays what I tell him to and lets me be in charge!”

I explode into laughter!

11. “So….tell me about school”……………” Well, I love my friend *Jacob, and *Daniel and * Joshua….but sometimes we are naughty and get into trouble…I love it when we play on the computers – I’m really good at them Mum, did you know that?”

Me: “I’m sure you are mate” (smiling and ruffling his hair) “Anything else you want to tell me?”

H: “Yeah, I hate it when we have to do handwriting because my hand hurts and I can’t do it so I get all squidgy again and mad…..Sometimes the classroom is noisy and I can’t hear the teacher so I guess what I think she said so I don’t get into trouble, and then I do the wrong thing and get into trouble anyway” . (another big heavy sigh)

Me: “Well maybe you should just ask her to say it again and tell her that you didn’t hear her”.

H: (sighs again) “Then everybody will think I’m stupid”….

I make a mental note to go and talk to the teacher about this….. “It’s ok mate, I’ll help you sort this one out”.

(Relief washes over his face).

12.” Can Mummy and Daddy do anything to help make your life a little bit easier?” .……………” Just don’t yell at me, and don’t get mad at me if I ask you to say something again because I didn’t hear it”.

Me: “Sure, ok darling” ( thinking that maybe a hearing test is in order!)

13. What are your favourite things to do? …………..”Playing the Wii and Ds, Watching Sonic or Shadow on TV and watching Stealth bombers on You Tube”.

Me:(amused) “Do you like to do anything that isn’t electronic?”

H: “Ah….no, not really!”

14. “What do you want to be when you grow up?” ………”A policeman so I can have a gun (!!!!)….Or a Stealth Bomber pilot so I can drop missiles on baddies (!!!!) ”

Hmmmm….Violent much son?

15. “Where is your favourite place” ……….” Grandma’s house and Questacon”…….”And I really want to go to Disneyland one day” .

(yes son, you’re not alone there!)

16. “Do you know that I love you to the moon and back?”……….”Oh Mum!” (rolls his eyes again and giggles) “You CAN’T go to the moon –  you don’t have a rocket silly!”

Me: (smiling) “Ok then, I love you THIS much” (opening my arms as wide as they go )

H: “You forgot to say go, go gadget arms!”

 

Ah…THAT’S my boy…….Isn’t he GREAT!

 

Ella's lifeline…..and her mums!

“In primary school, these girls often cope by finding one good friend. This friend is often kind and motherly, and her friendship is a lifeline to the girls with Asperger’s Syndrome.

In fact, if she moves away, it has devastating consequences.

Another way that young girls cope with their disorder is by playing with boys. Male games are rule-oriented and do not require as much social and emotional understanding as female interactions do.”

The above paragraph is partly taken from a web page that you can find here. I have changed the word elementary to primary as is in Australia but other than that it is verbatim.

Now….Can I just start by saying……I am SO thankful that we live in an age where we can access information like this at the click of a button.

 

Yes, I know Lauren's face is blurred - it's not my place to put her face on the internet

 

We had a great weekend.

No , actually, it was FABULOUS!

Let me tie this all together and explain……..

If you have been reading this blog for a while you will be aware that:

a) We believe that Ella is on the autistic spectrum as are her brothers though she is not formally diagnosed and

b) that she has endured some pretty heavy-duty bullying for six years straight.

Ella has made a great friend this year called *Lauren.

Lauren only started new to the school this year so she is unfamiliar with what the other yr 5 girls think of Ella.

Lauren has an older  brother with Down Syndrome so she understands how it is to grow up with something a little “Different”.

So……(this is where the good bit starts) Imagine my delight when Lauren invited her over for a sleepover on Saturday night.

Lauren and her Mum *Trish came over Saturday afternoon to pick her up and stayed for a coffee and a chat. And then Trish revealed some AMAZING things to me that I NEVER knew before now.

Apparently, around the time that these dreadful little girls were taunting Ella at the beginning of this year, they also started to pick on Lauren BECAUSE she was with Ella.

For no other reason than that.

Just because she was friends with Ella.

Charming aren’t they!

Anyway, Trish was telling me that when this first happened, that Lauren came home upset and told her what was happening and Trish told her daughter that she had to make a choice.

She told her that she needed to choose whether to leave Ella and therefore taking away the reason for the girls to taunt her as well, or stick by Ella’s side and stand up for her.

Obviously, Lauren chose the latter.

And I started crying!!!!

I did (of course) start to wonder what would have happened if Lauren had have chosen the first option and turned on Ella too – but further on into the conversation with Trish, I got my answer.

Trish told me that she was raising her children to learn tolerance and kindness. And I believe that Trish wouldn’t have given Lauren that option if she didn’t know beyond a shadow of a doubt that she would make the right choice.

And God bless her – she did!

Trish also told me that the “staff in the positions that are in charge of Ella and Lauren”  (can’t give away job titles) had a meeting with her and Lauren about the events that had taken place with Ella and the bullying shortly afterwards.

(I had written an email to 4 staff members describing the events that Ella had told me) and these staff members were following my allegations up with them.

Part of me was pleased that they’d delved deeper into this than I had thought, but another part of me was disappointed that I’d never ever been given any feedback or follow-up to these events. As far as I knew – nothing was ever done about it all.

(Just as I have never received ANY feedback from the documentation that I took up to the school regarding Harley recently.) Hmmmmm…..

Anywho, The next line of this paragraph also peaked my interest as it rings very true for Ella.

In fact, if she moves away, it has devastating consequences.

Sure – there have been instances still where the girls get Ella on her own and start picking on her again, and there were the “fat” taunts recently , but interestingly enough – EVERY SINGLE one of these events have happened on a day where Lauren has been absent.

Lauren is on the student council so often gets called away but now Ella has been accepted as part of a 4 person little group and the other 3 girls include her when Lauren isn’t there.

I’m just so thankful I could burst!

And lastly,

Another way that young girls cope with their disorder is by playing with boys……Yes, yes, yes!….When Ella was right in the thick of the bullying, she would often play handball with the boys because they accepted her for who she was.

So, you see – there is a big warm fuzzy feeling washing over me for the first time since Ella started school almost 7 years ago, and I like it!

Most afternoons, Ella and Lauren are on Skype even though they’ve only seen each other a few hours before hand.

It’s SO cute hearing them discussing all those amusing little tween things.

And thank goodness…….BOTH of the girls think Justin Bieber is annoying and overrated!

LOL!!!

My mother, my respite.

It’s almost midnight & I know I really should be in bed.

But it’s my birthday in exactly 13 minutes and by the time I finish this blog I will be another year older!

I think back to this time last year- Lucas wasn’t yet diagnosed, Harley was OUT OF CONTROL and I was literally pulling my hair out. (I have bald spots to prove this!)

Anyhow, back to explaining the title of this post. “My mother, my respite”.

It kinda speaks for itself – my Mum is one of a kind. She is the most generous, kind, compassionate and understanding soul you’d ever want to meet. I really am SO blessed to have her as my mum.

(I have other people in our lives who also would too if their situations allowed them to – but she is in the fortunate position where she is able to do this).

My husband Mr Patient works in a job that requires him to leave the house in the morning before the children or I even wake and he often doesn’t get home until 10 minutes or so before their bedtimes – and often after they are already asleep. So I do all the feeding, bathing, homework, therapies and parenting alone most nights.

Add to that, the fact that he has to go away on rural visits every fortnight for 3-4 nights at a time and also the fact that we don’t have any family living near us and it’s easier to see why I NEED the occasional respite.

I’m actually doing great at the moment. But, there were moments in times past that I haven’t done so well.

Like the time that my daughter Ella rung my mum because she found me sobbing uncontrollably laying on the kitchen floor unable to get any words out of my mouth because I was so bogged down with depression and overwhelmed by raising 2 boys with autism. I was the whipping post for them. The one that would get hit, kicked, punched and screamed at when they weren’t coping. The one that cuddled Harley tight until his rage subsided and would then have to patch up my own subsequent wounds.

Or there was the time in the supermarket where a lovely middle aged lady come up to me and touched me on the elbow causing me to jump a mile high and asked me if I was ok?- Apparently I’d been standing in the one spot staring vacantly at the shelf in front of me for ten minutes without moving and unresponsive to people’s attempts to talk to me.

I had occasions where I would sit in the drivers seat of the car and “forget” how to turn the engine on or how to put the car into reverse and would sit there sobbing because I thought I was losing my mind.

I didn’t want to kill myself -so I wasn’t exactly suicidal, but I do remember thinking how much easier it would be if I didn’t wake up the next morning. I so badly wanted to go to heaven and see my Dad so to die would be a win-win for me at that point.

All of this concerned Mr Patient and I greatly. We wondered if my brain tumour had grown back again, or whether I was literally going insane or having seizures in my head.

Off to the Dr I went and had some tests done to try to determine the cause.

The answer came back as “too much stress”- I laughed in the Doctor’s face when she told me that I needed to either: reduce my stress triggers or find some extra help.

I wondered if she knew ANYTHING about autism at all????? And wondered where on earth I was going to magically “find” this elusive help as often as I needed it.

And that’s where God started to turn things around for me.

We were approved for Harley’s FaHCSIA funding and found a wonderful OT and Speech therapist as well as an awesome tutor.

He was also offered a place in an awesome locally run “aspergers socialising group”  that meets once a week after school and if you do the maths: that’s 4 afternoons a week where I get an hour break from it all!

If compare my state-of-mind to this time last year…….I can see that it is now FAR more positive and my stress and anxiety levels have lessened dramatically.

I thank God every day for giving me such a loving and kind mother and that he has provided respite for me in different ways than I would have expected it.

Whilst Mum is able to give me larger blocks of “time off”, the weekly snippets of time that accumulate are also very valuable and as I blow out *ahem* 35 candles tomorrow (actually, it’s now today as it’s 12:16 ), I am sure that this next year will be filled with even more hope, love and progress of the wonderfully positive kind!

Mum with the kids at Seaworld