Friday, January 28, 2011

Non verbal communication - part one!

Moving right along!  Now that you have the ins and outs,  I want to chat about Nick's development, what we have been doing with our boy and where we are at!  This is going to take a while, therefore, have lots of posts planned!! (not really, but I am sure they will come to me!!).  


I mentioned briefly in a previous post that Nick had missed out on a huge chunk of his early development.  I also added a video clip showing two children, one who was on the right development track and one who was in the danger zone for autism.  Even though Nick's response (or should I say lack of response!) was very similar to the second child, we as his parents had no idea that Nick was lagging so far behind and that the gap was getting bigger at a fast rate. We weren't really aware of all the developmental stages that he should have be going through.  


It is only when I look at babies and toddlers and then compare them with Nick that I am reminded of all that Nick didn't do and couldn't do!  I have a friend who has a 17 month old boy and every time I see this child I am astounded by his capabilities.  In some areas, his development has already bypassed Nick's!!  This little boy is a very competent communicator and it is delightful to interact with him - the emotional feedback I get from him is highly motivating and encourages me to interact further!  We rarely had this with Nick and it is very easy to stop putting so much effort into interaction when your efforts are not reciprocated!!  Due to our lack of knowledge we missed the chance to really work at this, however, just because we missed the opportunity all those years ago doesn't mean to say that we can't go back and go over it again! :D 


When Nick was a little boy he showed no interest in looking at my face.  He didn't look to me when I called his name.  He had no understanding of the concept of reading facial expressions and body language.  During those years I did a lot of reading and I came across all sorts of explanations for this!  For example;  people with autism find it scary to look at a face; and people with autism don't see the whole face - only a part of it! Perhaps that's why Nick didn't look at me.......... all he could see was my nose and it was very scary!!!!! 


In my personal opinion, I really do believe that Nick didn't have a problem with looking at me or any other person for that matter.  He just didn't know WHY he needed to look. Move on a few years.....  My objective for the following clip is to give you an example of how Nick and I communicate now! (it has taken a lot of work to get this far - and is a whole new post!!).  He is now capable of looking to me for information.. You will notice him doing a few signs;


Tapping the top of  his hand means 'help'
Pulling a little bit of hair with two fingers means 'haircut' (don't know why he is using this one!!!)
Tapping two index fingers on his chest means 'computer' (this is a sign he uses a lot the moment he starts feeling anxious)
Hand to chin means 'thank you'
Waving his hand means goodbye! (it can also mean hello)
Putting his head to mine means "I really want you to go now - goodbye!! :-)


video

~ Goodbye...... until the next post! ~

Monday, January 24, 2011

The Fab Four!

Right folks, I have given you some background details of my boy and some idea of our life with him - as you can see he is extremely challenged, however, only mildly challenging!!!! (even if I say so myself, Nick is such a sweetie!).  As a family we cope quite well with the day to day stuff (my 'time out' is when Nick is at school, which incidentally finishes at 12.30pm).  Autism mucks up our weekends and social life quite a lot and when possible we make alternative plans to have a bit of 'autism free' time.  I used to feel terribly guilty about taking time away from Nicholas, however, to create a balance it was necessary to take this leap!

~*~

My plan for this post was to talk about creating a balance, however, I got a little sidetracked and instead ended up talking about four amazing women who have made an impact on my life........


INTRODUCING.......................... MICHELLE!

Four and a half years ago we were extremely fortunate to find a great Scottish lassie who was willing to get involved with Nick.  We were rather stressed parents back then and our quality of life wasn't great  We made the decision to employ Michelle to help us out in the weekends (two sometimes three weekends a month).  Michelle comes to our house from 10am to 3pm and this gives us the opportunity to spend time with Thomas, go out for lunch, do whatever we wish - even waste time on the laptop blogging!!  I think she likes us because she is still with us after all this time!!!   As you can see from the photo below, Michelle is a bit of a biker chick....... and she is so going to want this photo!  Michelle, we think you are fabulous and Nick has so much fun with you :D  xx



INTRODUCING........................... JENNA!

Jenna is Nick's facilitator at school.  She is a qualified teacher and has been working with Nick at Kids First for 18 months (I am waiting for the day when she tells me that she has found her dream teaching position!!).  Jenna and Nick have a lovely relationship thing going on and thankfully Jenna takes the rough with the smooth :)  She plays with Nick, works with him, guides him, encourages him, gives him opportunities to 'think for himself' and they have a lot of laughs.  Hey Jenna, you also win our 'fab' vote - we are so very lucky to have you in our lives! xx


The following clip shows Jenna and Nick having a bit of fun during an Occupational Therapy exercise!

video


INTRODUCING............................ JUDY!

Judy is our 'Super Teach' at Kids First.  She runs the program and guides the facilitators, who in turn guide the kids!  She also sends me off to the shops with a list of goodies to buy!  I am given photocopying to do, papers to print, pictures to make - think I need to change my title from 'Founder' to 'Personal Assistant'!! :-)
Judy also takes on the role as 2nd mother to Nick whenever I go away.  Judy, Clive and their two boys (picture of boys below) move into our house and Nick becomes part of their family :)  Nick is very keen on watching TV with Clive (oh what a surprise!!!) and wonder of wonders he also loves to get involved with their boys!  Way to go Judy, we Maitland's think you are the bees knees ;-)
P.S.  It's a borrowed baby and the bunny ears were worn for the Spar Ladies 10km!



INTRODUCING........................... KARYN!

Karyn came into our lives at the end of 2007.  I had advertised in the paper for a school facilitator for Nick and I always smile when I think of her job interview with me. Karyn  rocked up to my house with her mum in tow (to be fair, her mum was going to stay in the car and I had to drag her out!).  Karyn immediately honed in on Nick and I had a nice chat with her mum!!  Well, anyone who shows such a keen interest in my boy has to be extra special SO she got the job!  We had a wonderful 2008 with Karyn and then sadly she went off to London in search of a better paying job to pay off her horrible student loan.  Her plan is to study further and become a SLT................. and I just know she would also love to train to become an RDI Consultant!  Karyn will always remain special to us and Nick often asks for K,K :-)  The photos below were taken when Karyn came to visit us a few weeks ago!




~*~



Friday, January 21, 2011

Minor irritations!

Way back when......... when Nick was a little person and one who screeched his needs or pulled us along to whatever he wanted.  The years when the Maitland household was his to do with what he wished.  The years when he was the boss and look out if you didn't do what he commanded. Anyone interested in a few things that drove me around the bend?  

  • I used to have to lie with him at night (until around the age of seven) because he wouldn't go to sleep without anyone with him.  We ended up using a sleep technique to break this pattern - I know, it was a bit mean but I was starting to visualize putting a pillow over his head!!!!  Better to be cruel than in jail and especially a South African jail!!  Besides it took less than a week and we haven't looked back!  We then spent another year of him climbing into our bed in the middle of a night - this was not fun because he was generally awake by 4am! Thanks to a lovely girl called Diante he was cured of the bed hopping routine. To this day Nick still wakes incredibly early, anytime from 3.30am! The one and only positive point of his lack of flexible thinking is that he stays in bed until we go to get him up.  Yes, I should be encouraging him to think "Oh yay, I am awake, it's time to get up, go to the loo and then wake mum and dad"…… at 3.30am – I don’t think so!!  A girl needs her sleep, otherwise life would not be pleasant for all of those around her!!
  • The food issue is a killer and this still drives me crazy.  Nick eats the same thing day in day out.  Now, I am not one to force a child to eat, therefore, I will try and introduce new foods by adding a slight variation to his meal. I tell him about the new food and then place it strategically on top of his spaghetti bolognaise (supper!). Does this tiny little extra bit of something new get eaten - NO!  He can find the smallest sliver of the 'new food' and push it to one side. By the way, it took over six months of putting bolognaise sauce on his spaghetti before he started to eat the sauce – he would pull out each individual strand of spaghetti and eat them one by one!!  Regardless of Nick’s ‘diet’ he is a very healthy child – must be the lentils and vegetables I sneak into the bolognaise!!!  Any wonderful ideas would be gratefully received!
  • Dare we talk about toileting!  Shock horror, Nick was unable to understand the concept of doing a wee on the loo.......... we eventually began serious toilet training when he was consistently dry at night (oh dear – around the age of 8!). This was not an easy feat.  We put him on the loo as soon as we got him up in the morning..... I would then read him a story, run the tap, blah, blah, blah. Ten minutes later Allan would do the same and so on and so forth. Our time limit at sitting him on the loo was one hour!  Our patience and persistence paid off and after a week or so he had figured out what to do!  I am not going to go into details about the # 2's, only to say that FINALLY a year ago, life as we knew it changed dramatically and I can't tell you how relieved (ecstatic) we are :-)
This has turned into a long post - enough for now!




~*~

Monday, January 17, 2011

On behalf of.........

I have a special friend that I have known for roughly four and a half years. Way back then she brought her little boy to visit our new school 'Kids First'.  This little boy (I am going to call him David!) was the cutest package you ever did see.  A mop of hair and a chubby round face......... he was also extremely fast like lightening, busy, noisy, screechy, obsessed with sharks and any other rubbery feeling fishy toy. This little guy really touched my heart - he was the type of kid that I just wanted to grab onto and hold tight - of course, never in a million years would he let me do this!!!  Or so I thought at the time :)

Over the years I have come to know David and his mum extremely well. His mum is to be much admired, she is the most patient person I have ever met and believe me she has a lot on her plate!  David is now seven years old and he is still the most adorable child. He has a few words, he can still be quite screechy but he is a lot easier to connect with than when he was two and a half.  It has taken me a long time to build a relationship with this little boy but I think he likes me now!!!!  At least now he doesn't run away from me, he will happily be pulled into a tickle game of some sort and I can get him into my arms!  :-)

Something happened yesterday that his Mum said I should write about in the name of awareness!  Our boy (David, not Nick!!) has spent most of the summer in the swimming pool; his idea of bliss is being naked and wet!  In fact I think he found his place at Mbona - we went there for a weekend, just the mums and boys.  As soon as David saw the dam, he tore off his clothes and went racing in that direction - it was rather difficult to get him away from the water and back into his clothes!  I still have visions of his mum racing up and down the shore line and me standing there watching and holding onto her third child!




Well yesterday, my friend had to visit one of the largest and busiest stores at this time of the year, that's right - the dreaded school uniform store.  Ok, it is organised chaos but it is still CHAOS.  The place was chocka block full, kids running around, irritated mothers, the noise level would have been high.  When you are a little person looking up - the feeling of having people towering over you must be very scary.  Even more scary when you are a little boy who has major sensory issues.  I think it must have got too much for our little boy.  He stripped off ALL of his clothes and began to shriek.  This is the phone message I received from my friend “Had to tell u! Took Jack and David to Gem in Overport.  It was jam packed with people.  David does a strip show and proceeds to flap around screeching!!!! The whole shop was in hysterical laughter.  Think I also need a venting blog or write a book on embarrassing moments, certainly had my share"  

Oh, it is very easy to laugh and perhaps it helped diffuse the situation which I am sure was very embarrassing. These things happen in our life, more so for my friend than me and it is so hard to deal with this day in day out.  I am not sure how I would have reacted in this situation - my friend was lucky in that her child headed towards the changing rooms and she managed to corner him, get him dressing and then she ran like the wind!
Shame my friend, I think that would be my worst nightmare and if I was having a bad day and people were laughing all around me I would probably have started crying.  Knowing you, you would have handled it extremely well and with dignity - I can just see the smile you would have put on your face.  As soon as school is back we are heading to the nearest coffee shop for a large cappuccino and a good giggle! xx

Sunday, January 16, 2011

Definition of bliss - part two!

Now you  know!  Holidays don't work for us (well not ones that include Nick!).  Bit of a shame really as I love travelling and get serious withdrawal if I don't hop on at least two planes a year (one there and one back!).  I blame my mother for the travel bug as she emigrated to New Zealand  from England at the grand old age of 21 - she tossed up between going to Canada or New Zealand - go figure!!!

Thankfully we have a safety net, a little slice of tranquillity, a place to feel at peace, a special place where we can take Nick and be together as a family.  Our getaway is only a short drive from Durban and the cottage we frequent is shared by three families.  The cottage is old and a little tired,  the glasses don't match and the plates are brown for goodness sake.  Who cares.... the atmosphere makes up for the lack of beautiful objects and the outlook over Crystal Dam is a sight to behold.  It is not unheard of for a few of the local zebras to be parking off on our lawn keeping the grass low for us :).  I have often been woken at night with the sound of munch, munch outside of my bedroom window.

Does my child with autism love Mbona as much as I do.  NO, however, he is very comfortable there!  He tolerates being dragged off for a walk, he will tentatively step into our little dinghy and sit forlornly while we row around the dam on the hunt for the ever elusive trout.  Look out if we do catch something, Nick will shrink into his corner of the boat and look disdainfully at the poor little thing flapping around in front of him.

Mind you, stick that boy in the car with access to music and he is a different child - some things never change!   Sometimes you just have to go with the flow (as I keep saying!!).  Mbona doesn't help Nick but it helps us, which in turn I think is good for the boy.  We are relaxed and we have the time to just 'be'. 


video

Definition of bliss?  MBONA 



Friday, January 14, 2011

Definition of bliss - part one!

Family holidays are very difficult when you have a kid like mine - one who has extreme anxiety and really battles being exposed to new places, new people, new food, new anything!  Of course we have tried, oh how we have tried and then vowed never again, only to try again and vow never again!!

Our most memorable trip was to Kruger National Park.  My mum and my nephew were visiting from New Zealand and we thought what an awesome opportunity to go and experience a piece of Africa.... a bit of an exciting adventure for my nephew to add to his 'DIARY' which if I can recall correctly  was to be presented to his teacher upon return to school. (Haha, as if that diary ever got started - Gareth, if you can drag yourself off the farm and check out facebook, you actually might get to read this and let me know if I have over exaggerated - ps: Mate, I thought mullets had gone out of fashion!). 

Right, I am not going to furnish you with the details on the how’s, whys, where's of our holiday, otherwise you will be bored to tears (as will I).  Anyhow,  picture the scene.... there we were, cruising very slowly through Kruger, Allan the driver (of course), Nana in the front seat, Thomas and Gareth squashed in the jump seats right in the very very back of my car and comfortably placed somewhere centre was me and Nick.  Our eager eyes were scanning the horizon, checking out every little bush, stopping for the slightest movement - each of us so intent on being the first to see 'THE BIG FIVE".  When all of a sudden the white elephant in the car reared its head and screamed........ and screamed...... and screamed some more.  Oh joy, now what??  Eventually, after much gnashing of teeth and "shit, how do we get this kid to stop",  we ground to a halt and after scrutinizing the general lay of the land for scary lions and such - we dragged Nana out of her prized front seat and the screaming kid from his seat and swapped positions!  Immediate calm :)  Nick had access to the car CD player and oh boy did his eyes light up.  Now picture the scene..... there we were, cruising very slowly through Kruger National Park, windows open (shouldn't really do that!), MUSIC PUMPING LOUDLY AND REPETITIVELY, and a kid with autism deliriously happy.  Think I might have a video clip of this somewhere!


Thursday, January 13, 2011

The world of difference!

As mentioned in my previous post, Nick was not an effective communicator, he was only capable of getting across his wants and needs.  He also didn't have an interest in his environment and he certainly wasn't motivated to share his experience of what was happening around him - except to express his extreme anxiety (oh boy, the anxiety!).

Over time we (parent's!!) realised that Nick had missed out on a whole chunk of his development. (It is a parent process you understand - takes time to come to terms with having a special needs kid!!)   His communication skills were so far behind - the foundation for future development in this area had not  been addressed (by the parents!).  Anyway, no point in beating myself up over it - such is life - and it is never to late to start!!!

The following clip has an example of a child who is on the correct development path and a child who is in the danger zone for autism.  That 2nd child could be Nick!!  The clip is probably a bit long for many of you to sit through!  I am sure if you fast forward here and there you will get the drift of the difference between the two children.  I wonder how many of you will now look at babies and toddlers in a new light!!  I am always checking them out - can't help it!! :)


(I stole this clip from Zoe but have permission to use it from Brendan at Learning Together http://www.learning-together.info Thanks Zoe and Brendan x )

Wednesday, January 12, 2011

The power of voice - or not!

What's it like to have a child that is unable to utter one word let alone a string of words?  Strange, frustrating, sad, unbelievable, astounding, astonishing, did I mention sad?  Thinking back over the past eleven years I thought I could honestly say that I haven't been too concerned about Nick's lack of speech (mind you, at a team meeting many years ago I was asked what I wanted from Nick - I was so blown away by the enormity of this question that I couldn't find an answer and therefore blurted out "I want Nick to talk").  Writing this paragraph has dredged up all  those emotions that I have managed to conceal from myself - who am I kidding - deep deep down I would so love my child to 'speak' (says she with tears rolling down her face - shit, where did that come from!).

Ok, ok, back to the bright side.........................................  For a child that is unable to utter a word (although he does have a few sounds!) Nick has become fantastically apt at communicating, although only with people he knows extremely well.  When he was a wee boy we introduced PEC's (Picture Exchange Communication) and basic sign language. Nick has a large repertoire of signs which he is competent at using, although we don't have the need to use PEC's any more.  What he has become good at is the use of 'non verbal communication'.  By that I mean, we are able to communicate using the power of facial expression, eye gaze, referencing a person's face and body language to gain information.  This doesn't mean to say that Nick can communicate with ease - absolutely not, we have a loooonng way to go!

~*~

Monday, January 10, 2011

Hey, I think it worked!

video

Hmm, have managed to upload my first video.  Tell you what, this blogging is a lot of fun and I am certainly becoming a lot more computer literate.  Really enjoy putting together videos of Nick and then splicing and dicing to get to the finished product (think Thomas is rather impressed with his mother!!)

~*~

A common thread!

I have this friend, let's call her Zoe!!  I don't know her very well but we have stacks in common;

1. We both have kids with autism
2. Both of those kids are boys
3. Our boys are the same age
4. Both of our boys have the same core deficits
5. We are both passionate about RDI (Relationship Development Intervention)
6. We both have started schools for the sake of children with ASD

We do have a few differences;

1. My child is non-verbal and bloody useless when it comes to academics (not that this bothers me you understand!)  
2. Zoe's son has Asperger's (if I can be so blunt, Zoe's son is high functioning and mine is low!!)
3. Zoe lives in a cold country and I live in a hot one!! :)
4. Zoe can get funding for her school (I wish!)

Zoe has also started a blog, however, unlike me she has chosen a theme for hers.  For those interested please check out;  notnigellanotjamie.blogspot.com

As for my theme, unfortunately I can't think of one................ other than autism that is!  That will have to do for now :)

Sunday, January 9, 2011

Life as we know it.......according to Nick!!

Think about this! Would you want your child to spend his days sitting in front of the television/computer/stereo (yes, we still have a stereo!!) or even parking off in the car listening to music? Now think a little bit more! Would you be happy if your child was only watching/playing/listening to the same video clip/computer game/music over and over and over (until you actually feel that YOU are having the sensory overload!)?

This is what my child could do quite happily all day and every day. Hmmmm, he sounds quite easy, don't you think? Life would actually be quite simple if we could keep Nick in his little box (figuratively speaking!) with all his favourite electronic gadgets!!

Sadly for Nick we don't want this for him; and unfortunately, for us to get him out of his little box requires a lot of hard work and a lot of patience! We don't want to pull him out his safe zone kicking and screaming - we want to ease him out slowly - so slowly and gently that he really WANTS to come out!

Thursday, January 6, 2011

Baring my soul - UKZN & Autism Speaks Conference!


Autism Presentation Nov 2010
  
How did I get to be standing here!  I am not to sure - perhaps a moment of madness as I really dread public speaking!!  However, I do have a child with autism. Nick is 11 years old and as well as having autism he is a non- verbal child and has other co-occurring issues. Life is a challenge for him………and for me!  I am always telling Nick’s story – but today, I am going to give you a brief glimpse into my life - my story.

I also have another son – Thomas.  He is 14 years of age and is as bright as a button.  He is a typical teenager, thinks he knows more than me (which he probably does!).  Thomas has had his own issues coming to terms with autism, however, hopefully that is all behind him - he is thriving, he adores his little brother, has a lovely circle of friends and is academically strong! 
                                             
I have been married to Allan for nearly 16 years and what a time we have had.  Our life together has been like a rollercoaster – I won’t bore you with our personal history but we have survived! 

I am sure that my story is a very familiar story to all parents who have a child with special needs.  I don’t need to go into details on how devastating it is to learn that you have a child with a disability.  The disbelief of having a child that doesn’t fit your dreams and expectations, the race to find people to fix your child because you have been told that there is a critical period for learning, the search for a school that will educate your child to fit into today’s societyNo matter what our circumstances are - we all have to go through that period of grief – we all have to come to the realization that we have the responsibility of child with a disability who will grow up to be an adult with a disability.  Certainly for me, it was a very long and hard road to travel. 

Realization for me sunk in when I finally worked out that my little boy was too severe to cope with mainstream schooling and that there was no space available for him in any of the special needs schools. Upon reflection I should have started homeschooling Nick, but at that stage I didn’t feel confident in my ability to parent him successfully so how on earth could I homeschool him, be a mum to Thomas and a wife to Allan and also take care of myself.  It was a huge source of stress for me trying to figure out what to do with my child!  A friend said to me – “well, start your own school then” (Thank you Michelle M x).  Now, that passing comment got me thinking, so I discussed the possibility with Jill Stacey from Autism South Africa and she said to me ‘go for it, even if you start in your garage!”

It is so interesting how the world works!!  Nick, at that stage was attending a local pre primary school which was run by one of the churches in our community.  He had a facilitator with him but really wasn’t coping too well; however, the school was very accommodating and did their best for my little boy.  Nick had been there for six months when the school announced that due to a decrease in child intake they were going to be closing the school down at the end of that year!  Well, this all happened as I was starting to ‘think’ about starting a school!  Therefore, Allan and I approached the church with the idea of renting their premises to start our own unit.  We had 6 months of negotiation with the church – needless to say my anxiety level was very erratic during that time~!  The church eventually decided to let us have the premises for two year at an extremely low rental.   Thereafter we found a small property that suited our needs and one that also had special meaning to me.  It had once belonged to an old friend of mine and I used to take my boys there to play when they were tiny.  One of my earliest memories of Nick was him sitting on a picnic blanket in that garden and being totally oblivious to his surroundings.  Little did I know what was in store for us!

Kids First has now been going for five years and my how those years have flown!  If I had of known how stressful it would be to start and to maintain a small school I most definitely would have gone the home schooling route!!  It is a big responsibility taking on the care and education of other children.  However, it is such a wonderful feeling to have Kids First.  Nick is extremely happy there and he is progressing at his own rate, he is guided, encouraged, nurtured, and given opportunities. If he is having a bad day, he is in the right place to be helped out.  Kids First suits his needs and he can continue going there for as long as I want him to – there is no cut off age!  Having a long term placement plan for our child really helped us as a family to have some peace of mind

Over the years I have really had to look hard at my style of parenting.  In the early days of learning how to work with a special needs child, it was all about therapy, therapy and more therapy and in fact the clinical psychologist I was seeing at the time said to me “you are the mother not the therapist”.  I took that to mean I musn’t stress about doing all the homework – there were better people out there that could follow through with it and that I should just do normal mum things like day to day living.  Unfortunately the day to day living was all about going through the motions and getting through the day!  Upon reflection this is when I should have been more involved – I should have been playing with my child a lot more, I should have been more aware of his appropriate developmental level and I should have been interacting with him and encouraging him to interact with me………..Here I was plodding through life with autism and letting everyone else take responsibility for my child’s growth and learning -  when first and foremost I should have been building the type of relationship with my child that enabled me to help him and guide him.

I gradually started to make some changes in my life to enable me to be more focused on creating a balance.  The one biggie that made the difference and this one is very hard to do!!  I simplified my life……. I have really learned to slow down my lifestyle.  I USED to be the woman who rushed from pillar to post, I had to be busy, I was totally focused on Nick.  I had to make sure Nick’s hours were actively filled. I spent a lot of time in my car with Nick, which incidentally wasn’t a problem for him – looking out the window was like have a continuous TV!! And all of this didn’t even include my involvement with Thomas or my husband Allan.  Life was very HECTIC. 

I have also learned to say ‘no’ and I only take on any commitment that I feel I can manage.

Nick’s therapy schedule has been cut back quite dramatically and I now use that time to be with him, to include him in all that I do and to really utilize the time we have together.  I am now very aware of Nick’s developmental level and always take this into consideration.  I have also changed my communication style with him and what a difference that has made to my child and our interaction, we are much more connected and he is interested in being with me.  Due to this changes, I feel a lot more grounded and stress is no longer a major part of my life.

 At the end of the day I am one of the most important people in Nick’s life and it is not enough for me to just care for him and keep him happy.  I need to offer him the opportunity to expand his horizons and help him to have a decent quality of life.  Yes, it is fantastic to have a team of people taking caring of my son and insuring that all the bases are covered, however, an important lesson I have learned from my journey is that I am the person who has Nick 24hrs a day, 7 days a week, every month and every year until who knows when - and you know what - I now have a strong, healthy interactive relationship with my son.  I am pro-active, I am involved in his learning and helping him in his ability to interact and cope in the ever changing dynamic world that we live in. 
  
Yes, I have come to terms with the fact that my son is severely challenged and will never fit into today’s neurotypical society. However, I also believe that he will continue to make progress – it may be slow, but so what …….. we have all the time in the world!

I have learnt that in order to survive autism I must NOT let it take over my life – a phrase that I always use is “autism is not my life, it is a part of my life”.  I adore my child but I also have another son who likes having me around, a husband who hopefully still continues to like having me around.  Most importantly for my own piece of mind - I have my own time to do what I want to do – even if this is taking time to have a quiet cup of coffee by myself or a catch up with friends.  It is all a matter of having a balance.  It has taken many years to reach this conclusion and now that I am here – life is good J

P.S:  Photo from my trip to London, not the conference!!  

Tuesday, January 4, 2011

The Cuteness Factor!

It was brought home to me today that my son is no longer CUTE.  I am not sure when this happened, when he lost his cuteness factor, when he suddenly stopped being a cute little boy and instead turned into a tall kid on the cusp of puberty!  Where did all those years go?  The older he gets, the older I get!  I am really not keen on the laughter lines that no longer look funny, the grey hair that is showing an appearance (that I try to disguise every six weeks by going to man who can!!).  As for the body - let’s just not go there!

I had some CUTE little kids at my house today and boy did I just want to bundle them up into my arms and smother them with kisses.  Two of those CUTE little kids were children with special needs.  They were great kids, each with their own idiosyncratic ways.  They are kids that you look at and say "ah, they are so cute" ("ok, a bit of a handful, but still CUTE").  During their visit my son kept to his own space, bouncing on his Physio ball while stimming on the laptop. Occasionally he would pop his head out of the kitchen door just to remind us that he was still around!  It's quite a thing to be surrounded by cuteness and then this giant of a child appears with a big grin on his face and making the gesture for "apple".  

I am not ready for this next step - I want to remain in the CUTE phase!!!!!




PHOTO HAS BEEN REMOVED!


         

Monday, January 3, 2011

We love Woody!!!

Thought I would spend a few minutes observing Nick - him on his laptop (not really his but a very old worn out one that used to belong to Allan)........ and me on my laptop (writing this!)

As I gaze across the table, Nick fleetingly looks at me and his eyes wander back to his screen.  He is totally absorbed in the scene unfolding before him; however, as I continue to listen I hear the same scene repeated over and over.  It is a scene from Toy Story and I can hear lots of noisy cars - all of a sudden Woody yells out "DROP" and then a car squeals its wheels! 

I think that if I left my boy to his own devices he would play this all day.  Time to give him a count down, 5 minutes Nick, 4 minutes, 3 minutes..................................  "You need to turn the computer off Nick!" 

Sunday, January 2, 2011

The big split!

Well I never.........

I own a VERY small school that caters for children with developmental disabilities (started because there wasn't anything available for my son!).  We are on summer break at the moment and the school is sitting empty.  Thankfully I only live 5 minutes drive away!  The alarm went off at school today so I had to go and investigate - all was well, however, as I was checking the perimeter I came across our lovely strong sturdy fence....... which was no longer in place!!  See the photos!


The irony of it all is that my fence is made up of two parts, the left hand side is made of wooden slats (and is leaning heavily into the neighbours yard - I have tied the fence to a tree in our garden to keep it from collapsing!).  The right hand side is a relatively new fence - strong concrete posts and a thick wire mesh - a fence that should outlast the wooden slats! Right in the centre of these two fences (neighbours side) is a massive tree - which has now been divided into two pieces.......... and wouldn't you just believe it - typically the tree doesn't fall onto the dodgy fence!  Oh what to do, what to do!

Anyhow, I do tend to have an autism barometer (it's a visual one inside my head you understand!) and whenever anything happens to me I think of that barometer and decide whether the problem is small, medium or large.

I have come to the conclusion that this is just a little problem - and hey we can call it 'going back to nature', as in - we have a new fence and it just happens to be made of tree! :-)

Saturday, January 1, 2011

Another year!

Well, let's not bother with the old year and let's just concentrate on the here, now and thereafter!

Our first day of 2011 and already autism has been the focus of the day.  Nick has been a bit of a pain of late, off his food, a bit aggressive and lot of 'otherwise'.  HOWEVER, I think we have come to the bottom of his problem, or should I say root of his problem!  The poor boy indicated that his mouth was sore and then proceeded to try and jam MY finger in his mouth - this is rather big for me as it can be a huge chore to get in that   mouth and near those very sharp teeth.  Low and behold...... a very wobbly tooth and quite a bit of blood!  The kid has now taken himself off to bed and I would imagine that when he wakes tomorrow morning (bright and early!) his mouth will be minus a tooth and it will be safely tucked away in his tummy.......... don't think I will bother the tooth fairy with this one!