School's out!

Do I sense a little stress

Just a hint of angst

School hols were such a mess

No reason to say thanks

The empty days brought dread

My tummy was in knots

My shoulders felt the weight of lead

The anxiety of which were lots

My child just couldn't cope
It was stay at home or combust
Our journey was bleak without sign of hope
The many dreams were crushed

This went on for quite a time
Until not long ago, in fact
You see, with little steps we began to climb
The progress code RDI had cracked

Slowly, slowly I became his guide
And bit by bit, my boy welcomed me
It was with relief, I sighed
The weight lifted and we were free

What changed? you may ask
My boy became Mr Flexible
Life no longer a task
But meaningful and changeable

So comfortable with variation
No need for rigid routine
You can imagine the elation
felt by me and mine

No social stories for this kid
Or schedules of any sort
More freedom to do as bid
without a lot of thought


Our holidays are welcomed
No more angst or stress
More avenues to be explored
My worries a little bit less

We still have a way to go
Our explorations are close to home
I figure if we take it slow
Our future will provide more places to roam

Our SELFIE!
I held the phone and Nick pushed the button!

Sharing about sharing...

My personal facebook status this morning:  How are you feeling, Di? Bloody stressed, facebook! How about you?

This morning just didn't work out as planned and I was left with the dilemma of taking Nick along to an appointment that had been made for Thomas. It bothered me that I wasn't able to devote some time to Thomas. For once, I wanted to be there for my big kid, without any distractions, without Nick. Oh the guilt of a mother!

However, something happened, something that stood out for me as a big WOW moment.

Bright Side of Life facebook status:  Due to unforeseen circumstances I had to take Nick along to a specialist appointment for Thomas. Nick was amazing.... For 45 minutes he sat through the waiting and the consult. He did not need ANY screen time! HUGE! :)

How far we have come.......

I have been berating myself for not doing enough with Nick during this holiday season (four weeks so far and another one to go). All those days and hours wasted! Too much screen time all round! Lost opportunities and missed interactions. Oh the guilt of a mother!

But...

The success of our above outing/appointment serves to remind me of all that we have achieved during the last few weeks. 

Bright Side status:  We are getting brave! Yesterday, we took Nick with us to visit friends and have lunch (I took food for him!). Tomorrow night, we are taking him with us to visit friends and have supper (I will take food for him!). #nonickysitter #throwninthedeepend #itsworkingoutwell

Bright Side status: Nick's new milestones for today: First ever late night out with the old's. Happily ate supper away from familiar surroundings. Very relaxed about missing normal bath time routine. #tiredbuthappymum

Bright Side status:  Nick on top of a mountain and wearing shades!! It was quite a business climbing over small rocks to get to the edge! Very proud of my boy! :)

Bright Side status:  There has been a lot of exercise going on over the last few days!!

Bright Side status:  Hey, guess what....We are at a party (a very low key one!) AND Nick is with us!! Another first! Happy New Year to you all.

Bright Side status:  With a little help from the iPad, Nick made it until 10:30pm! He did great. :). Goodbye 2012. Hello 2013.

Bright Side Status:  Nick loves books! He is turning each page as I read the story. We pause a lot to make comments on what is happening in the story. Nick is very engaged and always keen to add his own opinion.

Bright Side status:  Nick coped well for about 20 minutes until a baby started crying... then he used his iPad. :)

Bright Side Status:  We got seriously lost trying to find our friends house. I was muttering at the husband as we were over an hour late. Nick gets our attention.... he holds up his fists and makes the 'sign' for "cross". He then said... "Sh..it". Very appropriate! :) 

(NO STRESS FROM OUR NICK... VERY CHILLED BOY!)

 

So, there we have it.... 

Our first ever *family* holiday season together, where we haven't had to make a plan for a Nickysitter!

As my husband said, "I feel normalized!"

~*~

I wish to thank Dr Gutstein, RDI and Kathy Darrow for empowering me as a parent and for guiding me on how to guide my boy. Nick may be severely autistic, however, the last two years have shown such wonderful progress. Onwards and upwards.

~*~

I don't generally post about Nick on my personal facebook page, however, I had to share the following.... 

 Thank you all for your wonderful support. xx

P.S. Thomas is fine... he just has to have four wisdom teeth out at some stage!

Walking the dog....

I bought a dog, a gorgeous, playful and extremely friendly cocker spaniel. I don't know why, it was just a spur of the moment thing. I really didn't put any thought into how Nick would cope with having a puppy around the house.


Sometimes I think, oh what the heck.... my son is autistic and I am tired of putting his needs first. I want, therefore, I shall have! Perhaps this is not the best attitude to have but I do like to be a bit reckless at times? It makes me feel alive and reminds me that I am my own person, not just Nick's mum.


So, we now have a dog and I am pleased to report that Nick is okay. They are not best friends and they both irritate each other immensely. The dog lies at Nick's feet and ends up being pushed away, or, as I have observed on many occasions, Nick will find a dog toy and throw it out the door. Today, no toys in sight, so Nick picked up the dog bed and threw it outside. Gotta love the thinking..... anything to get rid of the dog!


I laughed at myself the other day. The dog was nibbling on Nick's shoes.... which in itself is very naughty, however, this time the shoes just happened to be attached to Nick's feet! My boy was a little bit stressed, so I tried to explain to him what he could do.... "Nick, you need to stamp your foot and say NO!". Oops, he can't say NO. Need to make another plan there! :)


We have been doing the whole puppy training thing and we humans are doing well. The dog isn't doing too badly either. The dog trainer said that we shouldn't be walking the dog out in public until he is capable of walking by our side comfortably and obediently. Sigh, but people, I have to tell you...we live near the sea and we have a lovely long promenade that is just crying out to be walked on. Anyway, don't let on.... we have been sneaking down there and taking our walks.


Personally I think that *dog*, *kid* and *beach front go together nicely. Our weather is conducive to every day walkies and the drive to the beach takes all of ten minutes!


The dog is so good, he tends to stick with us and if he does stray, he comes back when called. Nick is also not so bad. He starts off at the beginning of the walk all grumpy and frantically signing "finished". Half way through he is content and beginning to smile. 

The actual walking can be a bit fraught and this is only something I have learned in the last week. If you think about the mix ~ one adult with one kid and one dog (who in reality is still a puppy). The kid is tall, lanky and covered in spots. The dog is boisterous and dead keen to get that nose working.


Both Nick and the dog listen to me, they stay with me, they crowd me. They are with me.


All is well.... until..... someone waylays the dog. Oh boy, this dog gets a lot of attention. It is very nice, although extremely distracting and of course the dog gets over excited. 


Oh, and Nick has also discovered people! He now gravitates towards people, he invades their body space, he will reach out to touch them on their shoulder. Eeek, this is all very new.


Picture the scene if you will. Dog gets tempted by three adults who are sitting down at a beach cafe. They are showering him with affection and offering water. I check Nick, he is standing there patiently. I thank the adults and gently try to extract the dog. I turn and see that Nick has gone! Oh damn. 


I see him in the distance (he has moved like greased lightening). Slightly ahead of him are two girls on a skateboard, wearing the tiniest denim shorts and bikini tops (just have to mention here that it is mid winter!). Oh shite, I quickly drag the dog from his adoring audience and run off after Nick. He is getting closer and closer to the girls. They sense him and stop to look. They then see me and the dog. I get to Nick and give him a big hug, saying to the girls "sorry, sorry". Bless them, they were so cool and so nice about this big kid who was practically on their skateboard. In fact, they immediately turned their attention to the dog......... phew, the relief!

I have to be honest and admit that I have some good laughs over my son and the dog!


Although it has to be said, by the end of our walk I was very frazzled. I dragged them both off to my favourite cafe. I gave Nick my phone to play with and I ordered one cappuccino and a bowl of water for the dog.

My Reality - comparison fatigue

Yes, you did read it right.... *comparison* fatigue!


I have had an absolutely splendid and a jolly good show of a time with my family in the UK (said with a very fake English accent!).


We have been everywhere, man (gotta throw in a kiwi expression, although it is a very old one!).


Eish (South African word), it's been cold, wet and sometimes wild. Feels very weird to experience a UK summer that is actually colder than our Durban winter!


Really and truly, the time out has been fantastic. I needed some space and I also craved having some time with my first born. It has been great to reconnect with Thomas, without having to take into account the needs of my Nick.


Generally, I live in a bit of a bubble world. My life revolves around my family (of which there are four of us and a dog), school, friends and all that other stuff that happens on a daily basis. I come into contact with children, although I don't spend a lot of time interacting with and/or observing them.


Thus, when I leave my little bubble world and spend some real time on the outside, I get a serious wake up call....


It is kind of like, "Oh shite, so this is what typically developing kids do!" 


I am thinking.. theme park, large noisy rollercoasters, kids running all over the place, yelling, screaming, negotiating, arguing, laughing and having a wonderful time. 


I am remembering the most precious 9 month old boy, who had made the long trip from New Zealand, adapted to his surroundings with ease and then thrust into my arms (a complete stranger to him). There was an immediate bond within split seconds That instant interaction with him was incredible. Oh help, he is more socially advanced than my own child, who just happens to be 13!


A picnic with kids, lots of noisy boisterous boys. A tug of war, pulling hard, moving together against their opponents, team work and laugher. Not possible for my Nick.


Playful cousins, jumping, tickling, rough housing and all that glorious stuff that kids do to each other.


I watched a young man showing his delight at the musicians playing their music on a busy market street. He rubbed his hands together, over and over. I listened to the repetitive sounds that he made. Was he autistic? Who knows... and it doesn't matter. 
.
After a while it gets a bit much. The observations start to hurt a little. The comparison is vast, a massive chasm between regular kids and the capabilities of my son. 


Real time can be exhausting....


My bubble world is reality, although the opportunity for comparison is less. Right at this moment, I am keen for less!

My Reality ~ Holidays

We have just arrived back home after a weekend away. Due to a coffee stop on route, I found myself driving the remainder of the journey ALONE! This is practically unheard of... me alone? I turned on the radio and drove. For the life of me I don't know how I got home! My mind started wandering and I started thinking about my situation and then the REALITY of my situation. My mind went through a whole range of emotions. Sadness, despair, anger, extreme anger, acceptance, a bit more anger, a few swear words! Of course I realise why I feel this way and I also know that it will pass!

I came to the conclusion that in order to work my way through my emotions is to write about 'My Reality' So here I am.... blogging about some of the crap that I go through! I am not sure how many 'My Reality' posts I will write and my language may deteriorate somewhat, but..... here goes....

Holidays

At the beginning of each long holiday I tell myself, "I can get through this". I remind myself of how far I have come. I have moved on from those early days of feeling very low, despondent and downright depressed at having my child with me 24/7.... to embracing the fact that school holidays are a perfect opportunity to slow down, chill and just go with the flow! Holidays have become much easier with time.

Hah!

I have just got through two whole weeks of rolling whatever way the wind blows. I am talking autism, stimming, the constant tapping on my shoulder, code undies, the repetitive mind blowing dull day-to-day routine of feeding, bathing, going out for coffee, grocery shopping... and any other activity I can think of that helps to keep us occupied! I try to keep off facebook so that I am not constantly reminded of all the lovely things that *normal* families are doing with their days. That's right, I am not part of a normal family.... I am part of a very dysfunctional family unit! Oh sure, a lot of people will say that each family is dysfunctional in their own way, however, throw a special needs child into the mix and then you will REALLY know what I mean by dysfunctional!

Can you feel it people? Can you feel my anger coming through? Shit, I so want to be normal and I want my child to be autism free. I want to have a regular life without all this extra stuff.... 

It's okay, this is just me after spending two solid weeks with my child without much of a break. The tension starts building and my shoulders become stiff. I know that I am very irritable and that it wouldn't take much for me to lose the plot! I can hear my inner goddess bitch saying "don't give me any grief, because my comeback won't be pleasant!" This irritability is only a short term thing. As soon as I have a break and/or my life goes back to normal (Nick at school five mornings a week ~ me free for 5 mornings a week!) then I become my old self again! 

I need my space. I need my time alone. I need time out from 'My Reality'. 

Thankfully, I have a big treat in order to keep me on track. A reward to keep my temper in check. A reminder that I am soon going to have some time out.

As I was nearing home, the following song came on the radio. I pumped up the volume and cast adrift my negative thoughts.....

The only words I remember are.... "what doesn't kill you makes you stronger". Those words made me feel a little brighter! :)