Sunday, January 29, 2012

What did you just say?


We use a lot of repetitive language in our family. Sometimes, I feel as if we are on that ever revolving hamster wheel, endlessly repeating the same words or phrase......


We also use a lot of non verbal language. It may be an expressive shrug of the shoulders, the raising of eyebrows or the sign for "I am feeling cross". It might be the twinkle in my eye that tells Nick that I am about to chase him. It could be the way in which he adjusts his body to engage with me. Perhaps it is his teeth tapping together, to ask, "Where is dad?"  It is wonderful to be able to communicate in this way, but oh boy do we get some looks when out in public, especially when the same movement/sign is used again and again.

Nick makes the sign for “iPad”
I shake my head “no”
Nick makes the sign for “iPad”
I shake my head for “no”
5 minutes later
Nick makes the sign for “iPad”
I shake my head for “no”

I thought I would share some of our standard family comments, the ones that make us chuckle or say “oh my word, why does he keep doing that?”

“Don't touch your bum and then your lip with your finger, it looks weird!”
 (Not so cool when out in public!)

“Yes, you do need to wash your hands!”
(How many times do I have to say this?)

Please stop flapping my underarm.
 (I have to chuckle, otherwise I would cry with despair at growing old!)

The meaning of his wave depends on the situation; it could mean hello or goodbye, although at times it can also mean #@#@ off
 (This one gives me a good chuckle!)

“I am driving; keep your hands to yourself”
 (He will insist on touching my hand, then the gear stick, then my hand... one of these days I am going to follow through with my threat to put him in the back seat!)

“You have already had two biscuits!”
(Typical kid thing pushing his luck)

“Hey Nick, how ya doing, I haven't had a hug all day”
(Thomas)

“Oh boy he has got hold of the TV remote again”
(Shake head)

“Stop stimming on the TV”
 (Chuckling at his chuckles)

“Stop pulling on my face”
 (Thomas) 

“Ahhhhhh, family hug”
 (Ahhhh, sweet)

“Psssssssst, Nick.... stop scratching your *_____* in public”
 (Puberty is such fun, yeah right!!)

“Stop picking your nails”
(Sigh!)

“Dad is at work”
“Dad is at work”
“Dad is at work”

“Yes, we are going to fetch Thomas from school”

“We are going to ­­­­­______’s house then school”

“Chill Nick, it is only a fly!”

“The toilet door is ALREADY closed”
(As Nick heads back to check the door for the second time!)


My response to comments made by J. Public.

“Really, honey on his lips will make him talk?”

“You wouldn't be able to do it?”
(What makes you think that I can?)

“Thank you; sometimes I don't know how I do it either!”

“Yes, he continues to make progress”

“He is fine, thank you for asking”

“It's ok, he is just saying hello”
(But then again, he could be saying _____*fill in the blank*)

“Really, I am not special, really....”

“Don't worry, it's ok, you weren't to know that when the trolley went into the back of your foot, that my child has special needs!”

“Nope, he doesn't talk”
(Although I have heard that honey on his lips might to the trick!)
  

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Saturday, January 14, 2012

The week that was......

Nick loves listening to music.....
For some strange reason, he will turn on the music and then take himself off to a completely different room and listen to it from a distance. The experience is even better if he has some cushions to burrow under!



Nick loves going in the swimming pool.....
He is very comfortable with Thomas and will happily go into the deep end of the pool, although he is attached to Thomas at all times. Nick's best moments are hanging on to the side of the pool and splashing his brother, me or his Dad. He finds it hilarious when Thomas retaliates and dumps huge amounts of water over him!



Nick loves going out in the car........
This kid of mine gets cabin fever. He is always happy to go out.... and as for me, any excuse for a cappuccino!

Nick loves the checkout queue at Woolworth's; the "next customer please" announcement cracks him up every time........
We have had some strange looks, some indulgent looks and some big smiles! Nick has the most infectious giggle and frankly, I don't care what people think! Although it has to be said, the people who give big smiles, get one back... from me! :)

Nick loves distracting me while I am having a conversation.....
patiently
he stands there waiting
reaching out his hand
to touch my arm
my face
internally he is stressed
picking at his nails

Gently 
he winds his arms around mine
softly 
distracting me
he pulls me along
away from the talking friend


I think that Nick loves being stubborn.......
He will purposely dig his heels in when he knows that I request his presence. Aha, but I am too clever for him ~ I stand there and wait. A year ago, I used to have to wait 15 minutes. Today, the longest I have to wait is one minute! Generally, he bounds off that sofa within a couple of seconds. Secretly, I enjoy his stubbornness; it means that he has a mind of his own.

I know that Nick loves school.....
He finds interaction with the other children difficult, however, over the years he has become much more accepting of them in his 'space'. Five years ago Nick would become very distressed if any of the children were upset. On Friday, I was amazed to see him sitting close to a little guy who was having a bad time. I am a little embarrassed to report that Nick was chuckling, although I assume it was because he found the noise stimulating. The picture below is not related to the distress/chuckling incident!



Nick loves our old/on its last legs laptop......
Sadly for him, it was beginning to drive me crazy. Think about it ~ could you listen to the same old Toy Story 30 second scene over and over and over? I lost the plot and made him pack it away into the cupboard. Before you say "mean mum", let me tell you that we set it up again this afternoon... BUT only for half an hour ~ How do you think I managed to find the time to write this post!

Nick loves his family.......
Without a doubt! :)

~*~

Sunday, January 8, 2012

Family time!

Our young Nick is a creature of habit! In fact, I also admit to being a bit static in my ways when it comes to Nick's night time routine. By the time 7pm comes around, he is tired.... and I am in need of some time out! 


Nick is an early riser and has been for many years. We have tried the *putting him to bed later* plan, and the *block out curtains* plan! I have thought about the *melatonin or heavy duty meds* plan. At the end of the day, we have come to terms with the fact that the kid wakes up early! However, he does have one static pattern that is beneficial to us all ~ he doesn't get out of bed until we collect him! :)


Our night time routine goes something like this;


Supper:         Spaghetti Bolognaise every night
Loo:              Sits doesn't stand   
Bath:             Needs help
Bit of TV:      Boomerang, although loves car racing
Brush teeth:   Taking turns 
Bed:              Night night boy, kiss kiss, close the door



Fairly easy, right? 


Many months ago, we decided to throw Nick a bit of a curve ball ~ we were invited to have supper with friends (at their house) and we took him with us. I gave him supper before we left home and we took along our trusty old/on its last legs laptop. Nick was just fine and dandy, very chilled to be surrounded by kids, noise and the general mayhem that happens when you mix a few families together.


Unfortunately, this was not the case when we got back home. He quickly became dis-regulated and insisted on the bath and then the TV (that damn routine!). He then told me that he wanted to go to bed, however, as soon as he got into bed he started crying his eyes out. When I tried to comfort him, he pushed me away and waved goodbye. Eventually, the only thing I could do was to say goodnight and stand outside his closed bedroom door, listening to him sob. It is the most terrible experience, to have a distraught child and no way of connecting with him to help him when he can't help himself. The remainder of the weekend was a write off! Nick was overtired and miserable and it took him two days to recover from that one night out! I am sure that you can understand my hesitancy at exposing him to further evening outings!


Roll on a year or so......


We have had the laziest summer holiday ~  life has been slow, relaxed and generally without any stress. We are all feeling extremely mellow. Perhaps this is why we spontaneously decided to take Nick out for supper with us last night!


The spontaneity came about due to Allan falling asleep on the sofa (it must be a man thing!), while his delicious curry was bubbling away on the stove. Hence no supper, although it has to be said, my Basmati rice was cooked to perfection! ;)


Right then, we made the momentous decision. It was now or never ~ Operation Take Nick To A Restaurant At Night.


Now what......... the routine? What to do? Is he going to cope? What about his supper? The bath? The loo? What will he be like at the restaurant? Will he lose the plot when we get home? I know it sounds silly, but when you have a kid with autism, life can be fraught with anxiety; and I am not talking about Nick here!


Nick solved the bath problem;


We had been splashing around in the pool for quite a while (this was my solution to the bath!) and Nick had obviously taken in a bit too much water! He hopped out of the pool quick quick, tore off his cozzie (really need to do something about this before he scares the neighbours!) and went racing off to the loo. Unfortunately the aim went a bit wonky and he made a mess. Sigh, now he really needed that bath! It helps to have a teenager on site to call upon when necessary, my lovely Thomas sorted out his brother while I sorted out the supper!


Nick was bemused to be heading out in the car after his supper, however, he took it in his stride and went with the flow. We sat down at our allotted table and again, Nick was very chilled. He gazed around at his surroundings, checked out the cars driving by, the birds landing near his feet, the people coming and going.... Not once did he ask for the TV, laptop or iPad. I wouldn't say that he was wildly ecstatic to be there, the serious expression on his face says it all, however, he wasn't unhappy! :) I did give him the iPad to play with while we ate our meal. All in all, our outing was a positive experience for the whole family, Nick included.




We did have a minor problem when returning home. Nick didn't mind that bath time was out of sync (as in, he had already had one), however, he refused to go to the loo! I kept him up for another half an hour and tried again..... No go! Needless to say, he ran to that loo pretty fast when I got him up this morning!!! Other than that, there was no fall out. :-)


I celebrate that Nick has become more flexible with changes in his routine and environment. It certainly makes life easier for us!


~*~

Thursday, January 5, 2012

Joyful January


I am starting out the new year in celebration of my son Nick.

What is there to rejoice about you may ask! Am I glad that I have a child with an intellectual disability? Am I delighted that he has autism/is autistic? Am I thrilled that I don't have the *freedom* of life like that of my friends? Of course I am heart sore that Nick will not get to experience life like his big brother. There is no doubt that I am concerned about his future and what is going to happen to him when I pop my clogs (so to speak!). Yes, I am terribly sad that we are a dysfunctional family and that there are times when Nick is excluded from family activities......

Over the years I have had a few choices;
1. Become an absolute misery and let my situation rule the rest of my life.
2. Become obsessed with autism to the detriment of my family.
3. Bore everyone to tears about the woes of having a child with special needs.
4. Pick myself up off the floor and keep moving.
5. Take on board my son's disability and all that it entails.
6. Become informed and also inform.
7. Accept my son for who he is and embrace his individuality.
8. Provide the right input to insure that he continues to progress.
9. Pull this child of mine into my arms and love him, no matter what.......

I choose to celebrate my son.


I celebrate the amusing stuff.
Nick has become very tactile and he has this need to touch my face and my arms. This is all very well, until he starts pulling on my jowls or flapping the underside of an arm!! On many a shopping trip, Nick will come to me and then pull in Thomas and Allan for a family hug. No doubt we have had some strange looks, although I prefer to remember the smiles! I enjoy how he is the typical boy when it comes to Bottom Burps (love Purple Ronnie!). He takes great delight in highlighting what he is about to do ~ how can you not smile at that!! It gives me joy to watch him initiate a chasing or throwing game with his brother. I love how Nick starts making his *humming* noise and then waits to see who will reciprocate! :-) 

I celebrate his little patterns.
Nick certainly shows signs of OCD! In fact, a few years ago, his need for repetitive patterns really hampered his progress with learning and living. This obsessive need has decreased, or perhaps, I have become accustomed to these odd quirky little patterns that are part of Nick. We have had the *drop to one knee* routine, the *go back and check the door* routine (oh, hang on, I also do that!!!!). This week it is the *close the loo door, run the fingers over the light switch a few times* routine. Last week, it was *have a sip of juice and then hold the container to the ear* routine. My word, we have had some funny ones! :-)


I celebrate his progress.
Nick continues to surprise me in all aspects of his development. A year ago, he was a stubborn mule, refusing to get off the couch and quite adamant that he was NOT going to engage with me! Today, he will sit on that same couch, look at me with a cheeky smile on his face, and then leap to his feet to come and join me! We have a lot of big words in our vocabulary; relationship, resilience, competence, flexibility, objectives, evaluation, personal experience memories, spotlight, reference, mastered, communication (and non verbal), perspectives, engagement, regulate, pacing........ and the list goes on... He is doing great, WE are doing great! :-)


I celebrate his nature.
Nick is a gentle soul. He is not an aggressive child. Sure, on occasion there will be a little bit of self injurious behaviour, however, this is generally under extreme stress or anger! I haven't seen much of this over the past year. He can be cross and shake his head for no. He can stamp his foot. He will wave goodbye when he doesn't want anyone around. He will sign "finished" if he has had enough. If we are doing something that he isn't keen on (long walks!) and he becomes *flat* and unresponsive, I start singing to him! His favourite jingle at the moment is Bananas in Pajamas and I only know three lines! This perks him up and gets him smiling! Nick is an uncomplicated chap and has ambitions of being a couch potato. Sadly for Nick, my ambitions for him are a little higher! :-)

Speaking of which, I need to stop procrastinating and get back on track with our latest objective...... It is all about Perspective! 

I celebrate Nick and I know that 2012 is going to be a very good year for us

~*~