Different NOT less.

This poem was inspired by a number of things that have transpired here lately. Firstly by Eustacia Grandin Cutler who is Dr. Temple Grandin’s mother who coined the phrase “Different not less”. She wanted the world to know that her daughter is remarkable but my no means any less of a masterpiece just because her thoughts and ideas are sometimes a little left of centre.

Another inspiration for this poem comes from sitting down at night and talking to Harley about his day and hearing the pain in his voice as he is starting to realise that he is different to his peers.

He has had a lot of “down” moments lately and it has been coming out in his behaviours at home.

No-one else is privy to this hurting side of him and that’s one of the downsides to being high-functioning I guess. He is able to recognise that he is an anomaly and is trying his darndest to change that and I’m so mega proud of my boy but sometimes feel like I’m standing on the sidelines watching a traumatic event take place before my very eyes and all I can do is stand anchored to the ground with my arms ties to my side unable to do anything to help him.

Sometimes I want to run away,

And leave it all behind,

I’m tired of the exhaustion, want

To quit the daily grind

.

The tiny things that make me see,

The hugeness of this task,

Of raising special children is,

A really montstrous ask.

.

It’s not the normal Mummy things,

That make me want to yell,

I can do the meals, the baths, the chores,

And manage very well.

.

The dressing kids and sorting fights,

And homework battles too,

I get that every other Mum,

Feels like she runs a zoo!

.

No, it’s not the things that we ALL do,

That make my tears begin,

And threaten to undo my cool,

and break my heart within.

.

It’s seeing how the simplest things,

Can totally undo,

My child because he cannot tell,

Me what he’s needing to.

.

When he erupts if he can’t cope,

I sense his physical pain,

I see the torment in his eyes,

And watch him thrash again.

.

He wants to be like all his friends,

He wants to blend right in,

He knows he’s different and that hurts,

His feelings through and through.

.

My mother’s heart just breaks apart,

When he tries to adjust,

To sit in crowds, with noise and lights,

And try to look non-plussed.

.

The things that others take for granted,

Really causes me stress,

I want the world to realise that,

He’s different but NOT less.

WORDS.

image from: jonsibal.deviantart.com

I truly am a great big fan of words.

Really! I love them. I don’t always have the right ones when I need them and I often use the wrong ones instead but still…I really really like words!

It’s not uncommon for me to put my foot in my mouth because I haven’t yet perfected the art of connecting my brain to my mouth – sometimes excitement just takes over but still, I love words. And I’ve often been accused of using too many words and also of using them too often, and I try to heed this but this is how I was made.

It’s who I am.

One day in the future, I want to do a creative writing course just because I want to. One day….

I love to talk, to meet people and I especially love using words to tell other people when I love or appreciate them. My husband: Mr Patient is not so much of a “words” person. He is more of an “acts” person. He would fill my car with petrol, wash the dishes or sweep the floor before he’d tell me that he loves me.  But I’m totally ok with that because I now know that he is showing me that he loves me instead of using words.

But words are also what hurt me more than anything else. I would rather be punched, rarely hugged or have my birthday forgotten rather than have someone speak harshly or unkindly to me. I get devastated whenever someone says something callous or thoughtless to or about me and I react badly to harsh tones and inferences in speech. My husband tells me that I’m too soft and that I need to eat some concrete and harden up, but I respond that I would LOVE it if it were that easy! He said he’d never met someone that cried as much as I do before he met me.

There are also some TV shows that I simply cannot watch because the interaction between the characters is far too nasty and I can’t stand seeing people get hurt even if it is just acting.

I mostly dislike email and sometimes struggle with text messaging because tones are often hard to detect through text. I have difficulty working out whether someone is joking or whether they are really having a dig at me.  If the same message were spoken to me either on a phone or in person-I can tell immediately what is meant by their remark because I can also read their facial expressions or body language or by listening to the inflection in their voice. But not when the comment is in writing only.

So I suppose you’re all wondering why I spend so much time in bloggy land where everything is in print?….Well, most of the blogs I read are about parenting and it’s easy to tell in the first few paragraphs whether or not the author loves, hates or tolerates their children. I mostly get it right because the “about me” section explains a lot and I get to know the author once I have been reading their blog for a while.

I often think about the effects that words have on my children.  While I do try to use words positively around and to them-I am far from the perfect mother!  I’m not saying that I always praise my children endlessly and never raises my voice…..but I do try to be careful what I speak over and into them.

Like I said – I am FAR from a model mother…I have yelled at them at the top of my lungs, I have called them little brats (and other choice words), I have threatened dreadful things and I have given them tongue lashings for disobedience but I have NEVER ever told them that I don’t love them, that they are a disappointment or that I wish I never had them.   Those are words that never leave a child. Once they’re out, they can’t be taken back. They penetrate the child and get etched into their memories for years to come.

I have learned through personal experience that words are powerful.

I’ve noticed that all 3 of my children are also super sensitive to words. All of them have taken after me in that area. Their little faces light up when they are complimented, when they are praised and when they are told that they’re special. They are not yet so good at using words to convey feelings and thoughts but they certainly understand them. My kids remember every single compliment they’ve ever received and remind us of them constantly!

But I have also seen the flip side.

I have nursed broken-hearted children in my arms when they’ve been bullied at school by venomous tongued peers. I have prayed with children who have had those in positions of authority abuse their position and call them unprofessional names and I have consoled all of them at various times when a sibling uses words harshly to get their point across.

They are all like me. They all need positive words and I am going to do my darndest to make sure that they get them!

And as for remembering words that were spoken…..there is an old saying that’s been too often misquoted. And that saying is “Forgive and forget”.

In the bible, we are taught that God forgives our sins and removes them as far as the East is from the West. It also tells us to forgive others as He has forgiven us but no-where does it teach that we are to forgive and forget. It just teaches to forgive.

In fact – If we were to forget every time that we forgave someone…..We would be forever walking blindly back into the same old situations and continue to be abused over and over again. We need to remember these hurts so that we can use the memory of how it affected us to guard ourselves from hurtful situations being repeated.

The trick is to learn to forgive those who have spoken wrong of us and move on carefully. Because only when we have forgiven do we take the weight off our own shoulders and are then free to live our lives in total peace.

Have a good weekend all x

The Assembly Conundrum…..

Darling I can see you, rocking and in pain,

Oh how I wish it wasn’t real,

I want to help you get back to some comfort once again,

So you can know the peace you need to feel.

~

So hard was school today my child, I see it in your face,

It’s written in contorted twisted frowns,

I hear in your moans and see you staring into space,

Cos sitting through assembly brought you down.

~

I know you tried your very best, to sit still and behave,

I know that listening was another test,

For what it’s worth: I think that you are oh-so-very brave,

When all you really needed was some rest.

~

The teachers watched me walk you out; they heard your piercing screams,

They wondered why you were so discontent,

I reached for you, you grabbed my hand, your grip was quite extreme,

I knew that you were well and truly spent.

~

I brought you home and let you go and lie down on your bed,

You stayed there HOURS and quietly hugged your bear,

Then finally you noticed me, you smiled and simply said:

Thank you Mum, I’m glad that you were there

Hooray in the name of progress!

Woohoo!
I’m so excited. My boys are both showing incredible progress!

Yesterday was a really grand day.

I went to help in Harley’s classroom as I usually do on Tuesdays and while I was taking one of the groups of children outside to listen to them read – The teacher was grading some of the kids to see if they were able to move up a level or two  in their reading.

Well…during this grading – one of the kids that she did was Harley and he moved up FOUR LEVELS!!!! I am SO proud of him!

This is huge from a boy who wouldn’t even pick up a book to look at 12 months ago!……Way to go mate!!

Since the boys have been sharing a room, Harley has read a book to his little brother every night….it is so cute to walk past afterwards and see them both engrossed in conversations over frogs and pirate ships!!!

They are not only enjoying time together reading but also DISCUSSING it later!

How cool is THAT!?

And yesterday marked another milestone for us. Yesterday was Lucas’ Kindergarten orientation and it went swimmingly!

He walked out of that building with a smile from ear to ear and he told me that he can’t WAIT to go back next week!

Now…to just try to keep that enthusiasm once he realises that he will be going to school for the next 13 years

I’ll leave you with a cute photo that I took in the classroom of Lucas and Harley sharing a chair and doing news together in Harry’s class.

SO CUTE!!

Wordless Wednesday October 26th……SQUEEEEEEE!

Dipping feet in the cold Pacific Ocean at Santa Monica Beach....the OTHER side of the Pacific Ocean to where we live

Whatever works.

  I am learning that our family is very different to most families. We don’t operate in the same ways that other families do and probably never will. Our methods may sometimes seem a little odd to the uninitiated outsider, but that’s ok

I have written before that I literally tossed out all the parenting books that we owned because none of them were covering the issues that we dealt with and as a result, we have had to figure out different ways to communicate with and discipline our children more effectively.

Ways that really work for us.

Years ago, I can remember sitting down watching Super Nanny and being so impressed by her techniques and I often teared up when the family became closer to each other and way more functioning as a unit by the end of the 60 minute episode.  So as soon as the TV was switched off each week, I became determined to implement her strategies starting the very next day. I would make a family rules list on big sheets of paper like she did and stick them on the walls, I prepared a “naughty mat” and I decided that this was finally going to be “our” week.

But what I didn’t know back then was that her methods are tried and tested on neuro-typical children NOT children like mine with an ASD. (In fact Super Nanny did do an episode with a family who had a 3 year old autistic son, and Jo Frost actually admitted that it was out of her league and called in back-up from Dr Lynn Koegel who is a renowned specialist in that field.) Ha! What most of us would give for a one-on-one specialist to work with…but I digress…

The most noteable method of Super Nanny’s that we tried, was the sleep technique. As my regular readers will know, Harley has always been a shocking sleeper and way back in the pre-diagnosis days when we just thought Harley was a difficult child, we had exhausted every method we’d heard of or read about. So when I saw the success on screen that she was having getting children to stay in their rooms and falling asleep – I truly believed that we would have him sleeping through in no time.

HA!

I couldn’t have been MORE wrong!

 Jo’s method worked brilliantly for our daughter and I know many, many other families who have also found it to be fantastic, but all of those kiddos are neuro-typical and (to my knowledge) don’t have the added anxiety issues on top.

The idea is that every time your child comes out of their room looking for comfort, you walk them back the first time and say firmly….”It’s time for bed” and then every other time following that you avoid eye contact and stay silent but you keep walking them back in until they get the message that they need to stay in there.

Well, I remember one night we counted:- 103 times we walked that child back in there! And that’s NO exaggeration. This went on hour after hour, night after night, week after week, month after month until we finally gave up and slept in there with him until he fell asleep from sheer exhaustion.

But often -as soon as one of us would sneak out…..he would wake and it would start all over again.

Well, I knew this method it was going to take time, I was aware that it is not a quick fix solution and that all kids are different, but after about 9 weeks, we resigned ourselves to the fact that we were really really crappy parents with a child who would probably never sleep!  And the sleeping issues have continued ever since.

But here’s the good news…..he has had blocks of time-often a few months long where the sleep issues have disappeared and he has slept (reasonably well) for a few nights in a row, – they are few and far between but they have happened. And all of those times have been when he is at his calmest and when there is nothing going on in his life to causes the crippling anxiety that he suffers from.

Like our time recently in America. He slept brilliantly every.single.night. But…he knew exactly what was going to be happening EVERY minute of every day and he had no time constraints, no rushing and no stress.

He shared a double bed with his siblings and apart from safety issues – there weren’t a lot of “rules” to follow. He was as relaxed as I’ve ever seen him!

Which was really surprising since I had anticipated him being a nervous wreck being so out of routine!

However…..since we’ve returned home – the sleeping issues have become MAMMOTH!

We have had hysterics at bedtime, night wandering, screaming and tears every night at all hours of the morning. The whole house has been like the walking dead because we were so darn tired!

I tried moving his bed away from the outside wall in his bedroom, I bought him a brighter night light, I bought an iPod dock so he could listen to music to go to sleep and I put a new weighted blanket on his bed.

Nope. Didn’t work.

But 3 days ago, we took a step that I have wanted to take for years but Mr P has been against: We moved Harley’s bed into Lucas’ room.  BEST thing we ever did. (Well….so far at least!)

Both of them have been excited to go to bed,  they both fall asleep almost immediately and for 3 nights in a row now – Harley has slept 11 hours straight!!!!

He tells me that sometimes he wakes up in the night but looks over and sees his brother and feels safe so he goes back to sleep.

Awwwww….

~~~

I asked the question “Should I put my boy’s in the same bedroom” on WW’s Facebook page a while back and there were a lot of mixed opinions about this topic and a lot of pros and cons were presented to me, but I figured that I would never really know if it was going to work if I never tried it.

I’ve also had people ask me why I would do that to them when we are lucky enough to have enough rooms for the kids to all have their own, but this is simply not about that.

This is about doing “whatever works”.

And right now…It does. I’m aware that it may not work forever, but while it IS working….I’m going to accept it with open arms! Our family isn’t ‘typical’ by ANY stretch of the imagination.

So….Whatever works people….. Whatever works.

The eviction letter.

Dear Fear, Insomnia and Anxiety,   

Go away. Your lease is hereby terminated.

I know that I’m really not using my manners here, but seriously….you have all totally worn out your welcome in my son’s life. It’s time you move on to someone else. We don’t want you here anymore.

You are exhausting and you take up far too much of his time and energy.

We are ready for new exciting adventures and he cannot do that until you get out.

Anxiety, you have been with him the longest. You take the silliest little thing and cause him to perseverate on it for hours and hours until the whole freaking family almost goes around the twist!

Enough already!

You have forced him to take pills to keep you from enveloping him completely.  The very mention of certain activities and situations awakens Fear, your partner in crime. And he’s a really sneaky bugger.

Insomnia, because of you, our entire family feels like the walking dead. Sleep deprivation is used as torture in some countries…..did you know that?

Yep….that’s right.

Torture…think about that for a minute.

We no longer want you hanging around causing havoc so get your bags, collect your last pay cheque and disappear forever without a trace.

My son has internalized so much more ickyness than should be humanly possible to bear. You have encouraged him to sit out of his own life and miss out on too many fun things.

I simply won’t let him miss out anymore. 8 year olds deserve to be kids and do the things that kids do without the debilitating grief that you cause him.

You need to find a new playmate.

Pronto.

And Fear, what can I say to you? You show up at the most inconvenient times, causing uncontrollable tears and ridiculous panic attacks.  You need to develop more manners and common sense like nervousness who only shows up periodically and doesn’t need to be told when to leave.

So, scumbags, it is time for you all to make like a tree and leave.

I’d like to say it’s been fun knowing you all….but it hasn’t.

Since you’ve sneakily slid you way into our lives things have completely and entirely sucked.

So off you scoot, leave your keys under the doormat and don’t let the door hit you in the butt on your way out!

Best of luck to you….not!

Fi. ….Harley’s mother.

P.S. Please tell paranoia that he’s on notice and I’ll be talking to him soon.

James 4:7

  Submit yourselves, then, to God. Resist the devil, and he will flee from you.

Wordless Wednesday 19/10/11….Can you tell I have boys?

Behind the scenes….The inside story :)

As most of you would have already have worked out….we had an absolutely fantastic trip to America recently.

Our children travelled brilliantly (a lot of thanks goes to the sleeping tablets that my boys already take on a regular basis) and also as a result of the months and months of forward planning that went into our holiday.

But yes, despite all this…there were still some “interesting” moments as is to be expected but I’m stoked to say that they really were rare and very manageable.

The wheels really didn’t fall off until we returned home this week but that’s a whole other blog post!

We were in the States for a total of eighteen days which seems like enough time to cover a lot of ground right?….Well, yeah, but we didn’t.

We know that overloading kids is never a good idea ESPECIALLY when they are on the spectrum! So we spent a lot of days just relaxing in the hotel room or taking it easy doing things like swimming or strolling down boulevards and lanes as the boys stopped and felt every lamp post, concrete square and blade of grass in their endless pursuit of sensory nirvana!

 

And I believe that we reaped the rewards of this in their subsequent remarkable behaviours.

 Sure, I would’ve loved to have spent more time shopping, sightseeing and I REALLY wanted to drive Route 66 but I had to make the decision to be thankful that we were even ABLE to have an overseas holiday with our kids and realise that this was not all about me.  THIS time anyway

We had to make the decision to not sweat the small stuff and allow the children to do things that normally would be jumped on immediately. Stuff that normally drives us spare and makes us crazy!

Like rolling around on the floor under the chairs at the airport….

Hiding under restaurant tables:

Or Climbing….And climbing….

And even more climbing!

And we had to make allowances for the children when they became tired or grumpy as a result of being kept out late the previous night……even if the strain of this still showed on our faces!

And the technicalities?

Well technically  8 years old is too old for a stroller right?!

Well…no.  No it’s not when you have Sensory Processing Disorder and need a place to escape the constant lights, noise and crowds.   You do whatever works when you’re us.

And chewing…..NORMALLY chewing on a hat cord would make me wild but I realised that Disneyland is quite a lot to take in and I had to  let it go…. MAN that was hard for me! I had to let a LOT of things slide and there were times that I had to just close my eyes or look away because it wasn’t worth the fight!

And you know what? I think I may have gained a little bit more tolerance and patience as a result!

But only a little bit mind you….let’s not go crazy now!

~

Yes…..There were a lot of different and unusual happenings while we were away.

But….

A lot of things were exactly the same as if we were back home…..

For example….we still had Lucas on constant sensory seeking missions:

And sometimes I had to help him by doing some O.T. on-the-go

Spinning anyone?

~

Car travel was pretty much the same as it is here:

And my kids still displayed impeccable table manners:

And….there was more climbing:

Thankfully, I’m an amazing mother who keeps up with her children by always staying fit EVEN when I’m on holidays:…..

Ok ok…..

You got me.

I totally lied about that……my choice of footwear kinda gives me away I know!!
But kudos to my Mum for playing along when I asked her to grab her camera and snap me “hard at word” LOL

All in all, it was quite a funny 2 1/2 weeks if you choose to see the amusing amidst the frustrating.

Thankfully, in Vegas you could buy Margaritas on the STREET:

And they were GOOD:

To the very last drop

We had such a wonderful time away……I hope you enjoyed this walk on the lighter side of life

Cheers: 

Fi xxx

Dear Disneyland….

So we have proved to ourselves that the seemingly impossible is more than achievable. And can I just say that this in itself is HUGE!

If someone were to suggest to me as recently as 2 years ago that I would be flying across an ocean for 14 hours with 2 aspie children, I’d have laughed in their face before diving into no-cope mode at the very thought and start heading directly for the closest exit.

But today I can hold my head high and confidently proclaim that WE DID IT!!!!!

And what’s more…..we had the BEST time!

In fact, we had such a brilliant holiday that I want to write about ALL of it but there’s so much to tell that I have decided to divide it all into several posts that can be read over the next couple of weeks or so.

Bite size posts if you will.

And today, I’m going to write specifically about the main reason for our trip and that is DISNEYLAND!!!!

It certainly lived up to its catchphrase of the “Happiest Place On Earth”.

In fact, I was so impressed by our experience that I have written this letter below to the management to express how grateful and appreciative we were.

Dear Sir/Madam,

I am the mother of 2 children with autism spectrum disorders and my family visited the wonder and magic that is Disneyland only 2 short weeks ago.

Our experience in your parks was incredible to say the very least and I am writing to say a big and heartfelt thankyou.

Thank you for your compassion and willingness to assist my family in any way that you could.

We received one of your Guest Assistance cards from your Guest Services on the second morning that we were there and used it many times throughout our time in Disneyland.

Thank you for recognising that my children and many others like them have a “hidden disability” and that there is a huge difference between a child not ‘wanting’ to wait and a child who physically cannot.

Thank you for not treating us as though we were free loaders who just wanted a free pass past the hundreds of people queued up for rides.

Thank you for understanding that we needed quiet waiting areas without excessive noise, lights, smells and crowds and providing this for us.

Your wonderful cast members made us feel very welcome and went out of their way to help my boys enjoy their time at Disneyland.

Thank you for helping our family to do what every other family with typical children manages without even a second thought.

One of my children and also myself cannot eat gluten and we were literally blown away by not only the choices that you provided but also the manner in which you provided it.

We ate in several of your restaurants and also at the Storytellers Café in your resort and were astounded that each time the Chef came out to our table and helped tailor a menu to our needs specifically.

We did not find eating gluten-free this easy anywhere else in California State!

We are eternally grateful that my son was able to enjoy a burger and fries that wouldn’t make him ill and be just like all the rest of the kids around him for the first time in a very long time.

Your cast members all made our experience extremely positive and we will go out of our way to tell other families how impressed we have been.

Thank you again from a mother who is eternally grateful that her family was able to successfully visit the “happiest place on earth”.

Yours Sincerely,

Fiona……………

As a very close and fellow gluten-free friend always says to me….We need thank the places that do get it right and suggest improvement to the ones who get it wrong or nothing will every change for the better. If they don’t know….they can’t change it.

And I believe that this is also true as an autism parent.

The more we applaud those who help us….the more that the message  will spread.

Gratitude goes a heck of a long way! People LOVE to be thanked.

And the more we thank, the more that community will continue to gain awareness of the needs of families living with autism.

But on the flip side – if we keep quiet, nobody will ever learn a thing and we will keep fighting and losing the same old battles time after time after time.

**** Mark 9:23 ****

 “What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.”

Home again, settling back in.

So….I guess you’re all wondering how our holiday went aren’t you?

Well…In short – it was WONDERFUL, and the kids travelled brilliantly but at this point I have far too much going on to find the time to sit down and write a full post but I promise that it IS coming!

Tomorrow is my lovely Mum’s birthday and we have convinced her to stay here a little longer to celebrate with us.

But after she goes home and life returns to some sort of normality (yeah…I giggled at that too!) I will put together a few separate posts with photos all about beautiful California and our time there.

I hope all my cyber friends and real life friends have been well and I will be catching up on my blog reading and commenting over the next few weeks as well.

Thank you to all my faithful followers…..luvyasall!

Wordless Wednesday 12/10/11… It’s all in how you hold your tongue..

Wordless Wednesday 5/10/11…. Brothers bonding over technology