Wednesday, May 25, 2011

Life!

It's been a mad, bad, sad day!


I woke up far too early and couldn't go back to sleep. I dragged both boys out of bed and even tried singing Happy Birthday to Nick....... no response!!  Oh what a surprise!!


For the first time ever Nick decided he wasn't going to eat breakfast.  He sat at the table like a slab of granite.  So.... no breakfast for him today!


Then it started pouring with rain!  I raced off to the school bus stop with one boy and I couldn't help myself here (must have been the breakfast thing!!!)... I wept and wailed all the way to the bus stop, with the teenager sitting in the passenger seat looking absolutely flummoxed. To give him his due, he did give me a hug when he got out of the car!


I then rushed home to collect the other one, to get him to his O.T session by 7.30am (takes half an hour to get to O.T!)


Once O.T was all over and Nick was back at school....... I headed off to buy bread and milk and then to meet a friend for coffee at 10am! Well, would you bloody well believe it, as soon as I left the supermarket carpark - the car started playing up and an ominous light started flashing on my dashboard. Thankfully the mechanic we use was just across the road and thankfully Allan is away! :)  One of the lads dropped me at home to collect Allan's car and I still made it for my 10am coffee!


Oh yeah, so much for retail therapy - the money went to the man who came in this morning to inject all the holes in my kitchen floor.  We are riddled with bora, well not any more!  But I am R1800 short, could kick myself for not getting another quote!


So anyway, I collect Nick from school and what does he do when he gets home - takes off his shoes and stands in a little puddle of poison that hasn't been wiped away!


Oh, nearly forgot!  Gladys (who comes to my house on a part time basis to do some cleaning and ironing - yes I am very lucky!) comes to work late.  To be honest, this doesn't bother me as she is a really nice woman and we have an easy going relationship. Well, my bottom lip dropped to the floor when she told me why she was late, she was also quite astounded that I hadn't heard the news!  Her daughter's school was possessed by demons yesterday.  The demons did not affect the boys, only the girls. There was a lot of weeping, wailing and gnashing of teeth going on!  Therefore, they were all sent home yesterday and couldn't go back this morning until all the demons had been chased away. If I had of known, I would have gone to the school yesterday and joined in - that way, I would have been absolutely fine today! Yes, I know that I am being cynical!  Sometimes this cultural thing has me shaking my head!


I took one look at Nick this afternoon, (after he had eaten some lunch!) and thought to myself, I really can't deal with you today.......... so I let him stim all afternoon on the computer and then the car CD player.  Happy Birthday Nick!  Needless to say he was extremely happy for the rest of the day!


At 4pm, we went to collect Thomas from Hockey. What should happen when we get to the new hockey astro....... we come across a security guard and a boom.  And guess what he tells me.... can you guess?  All I want to do is drive into the carpark, collect my son and his mate and then leave the carpark.  But no, I don't have a sticker on my car, therefore I must park my car on the verge outside on the road.  So, I tell him that I can't leave my child with special needs in car alone and I can't take him with me!!!  We exchanged quite a few words and I won!  Am phoning the school tomorrow!


But you know what, all this is nebulous stuff, typical day to day stuff, bits an pieces of life that aren't that interesting.  There is a lot more important stuff out there, a lot more important people out there, special people. We only have one chance at life so we have to grab it, enjoy it, love it! So no more whining from me - 26th May is a new day and I am ready to get on with it.  
~*~
My thoughts are with a very special friend
~*~


Saturday, May 21, 2011

A sense of community!


Where to start!!

Today I attended a parent support group that was organised by Action in Autism. The meetings are held every month and anyone with an interest in autism can attend - parents, children with asd, siblings, adults with asd, educators, friends, Grannies and Grandpa's.

Sometimes I go, sometimes I don't! 

What an eclectic bunch we are. Autism has no racial boundaries, there is no cultural divide.  We come together from all walks of life - there are new parents, veteran parents, some of our children have many challenges, some of our children are at university, some of us are married, some of us are single parents, some of us are educators........... this list could go on and on.....  BUT we all have a connection with autism!

Well, I had a particular reason for going to the meeting today.  The guest speaker was a Dad of two young men with autism - I know this Dad and he knows me BUT we have never really spoken except to say "hello".  I have known of his family for years and years and I have watched his boys grow.  The Dad is also a teacher and in fact he teaches Thomas Afrikaans....... oh and he is also a rugby fanatic..... and he is a big man, I am thinking Jonah Lomu big! (you can tell that I don't really keep up-to-date with rugby because Jonah is so last season - very shocking that I don't know the team players.... except for Dan Carter and that is only because he is cute!!)  I seriously wouldn't like to meet this Dad on a rugby field and I am so desperate to tell you his name but I can't - can I?  Ok, best I not - just in case!!  

....... onwards!

This Dad was fabulous, he spoke about his journey from the beginning to where he is now and he had us all sitting on the edge of our seats listening to every word. He spoke about the people he has come across.  Shaelene, I know you are now miles away but did you feel your ears burning - their first ever angel! :) He spoke about his boys and the dreams he had of standing on the side of the rugby field yelling encouragement to them, he spoke about his wife... and told her that he loved her, he spoke about how important it was to have an outside interest (can you guess what his was... haha) he spoke about how it has taken many years to reach acceptance. He spoke about his deep love for his children. Ahhh, it was just wonderful, straight from the heart, gut wrenching stuff.  He told us that this was the first time he had spoken in public about autism and his family..... it has taken him 20 years to get to where he is today!

Crikey, have just seen the time - the rugby started half an hour ago and I am the only person in Durban NOT watching it.  Please excuse spelling mistakes - no time to proof read!

Thank you Mr Dad, your talk was just perfect. 

Thank you Action in Autism - the sense of community this afternoon was huge! :)


GO SHARKS!





~*~



Monday, May 16, 2011

Hmmmm, the iPad!

I live in a house full of gadgets...........


My husband is a bit of an electronic geek.  He has been known to fire up the Garmin for a trip to Mbona (a route that we have taken many many times!!) (UPDATE!! apologies to husband - he said he fired up the Garmin to charge the batteries!!!). As for that watch he wears to keep track of his running routes and the kilometres he has accumulated each week blah blah blah!! :D  We have boxes of bits and bobs - odd things that belonged to something but we can't remember what! We have old phones, old cameras, an old computer, wires and leads and goodness knows what else!



As for Thomas, he comes out with all this strange computer geek language that I don't understand....ripping, de-fragmenting, IP address, firmware and metadata. He laughed at me the other day because I said "url" - personally I think it is a lot quicker to say the word instead of saying each letter!!


Nick is also quite attached to gadgets!  We have a very old outdated laptop that Nick loves - on this laptop he can play games and watch DVD's.  I use the word 'play' quite loosely because Nick does not play..... he stims! He is quite capable of repetitively playing a particular scene on a particular DVD for hours.  Obviously this really is not a great habit to have, therefore, we restrict the time that he spends on the laptop.  Generally it is used when we need a break!!!!!  Bad parents! ;)


Nick has a couple of AAC (Alternative Augmentative Communication) devices. These gadgets can be very useful in helping a non verbal child to communicate. However, we have been careful not to use each device as a tool for Nick to request his wants and needs, as this can become quite static and one sided. i,e. I want some juice, I want a biscuit, I want TV etc etc. We use the devices to share our experiences with each other, to build words, to help with the construction of sentences, we play games and comment on what is going on. The GoTalk boards are descriptive and forever changing! The Lightwriter is not as popular as the GoTalk....... and it cost a bloody fortune (iPads weren't around when we bought it!). The Lightwriter doesn't have voice output so Nick is not so enthusiastic when using it (voice output creates a lovely auditory stim for him!). Have these devices been wildly successful..... no!  However, I do think it is important that Nick is exposed to different forms of communication. 




Which leads me on to the next gadget! The iPad!


For a few months now Allan has been deliberating over the iPad.......to buy or not to buy! Please bear in mind that his thinking was not really revolved around Nick!!  Eventually the temptation became too strong for him, especially with the arrival of the latest addition of the iPad2 - another gadget to add to the collection!


My only request was the purchase of the proloquo2go app for Nick. I want to include Nick in the use of the iPad2 but his involvement must be people related - anything he does must be interactive with someone else.  I don't want him to start using the iPad as a mobile TV and I certainly don't want to introduce him to further games - no matter how educational they may be!  


I am not sure where we are heading with prologuo2go but at this stage I am using Nick's love of listening to stories......... I have started making up some story boards for his favorite books - with Nick looking over my shoulder!  I talk about what I am doing and include him the process. :) 





We are just taking it slow and keeping it simple............. both of us learning how to work this new gadget!  The following clip has been heavily edited due to the fact that Nick's favorite books are seriously long and any more than two minutes of footage gets a bit boring!

Righto, time for me to go and find my best gadget!!
My Kindle!
~*~

Friday, May 6, 2011

Not so bright today!

May is not so great for me........... the closer and closer I get to May 25 the more of a misery I become.


Nick was born at 6.30am on May the 25th 12 years ago. He would have been born around 4am if my Doctor had been so inclined to get out of his bed!  Not that I dislike my OB/GYN you understand, in fact, he is a really nice guy! :)  However, I did raise my eyebrows when he finally came to assist with the birth of Nick......... dressed in his suit!!! 


Just out of interest, my original OB/GYN for Thomas' birth was a real hottie and most of the mums who went to him had a little heart flutter here and there!  He moved to Australia! :(


Anyway, Nick entered the world and the only comment that I can remember is the one that my husband made - he told me that my face was SO red....... of course it was bloody SO red, I had pushed for Africa and the kid was rather large! Cheek of the man!


To carry on......... the first phone call was to my mother in New Zealand and it went something like this....


"Hi Mum"
"Hi Diane, are you ringing to wish me Happy Birthday?"
WOOPS!!!!
"Been a bit busy Mum, sorry but I forgot that it was your birthday...........anyway, Mum, you have a new grandson"!!!!


So Mum - here is wishing you a very HAPPY BIRTHDAY on May 25th.  Happy 70th Birthday Mum!


I will phone you Mum, however, I am going to be incommunicado with the rest of the world - no phone calls, no sms's, no internet, no bbms, no emails, no facebook (no facebook!!!!!!).  May 25 is the worst day of my whole year and I am going to face it how I want to.......... and that may mean spending money!  It is only one day out of the whole year so a 'quick fix' should be sufficient to get me through! ;) 


A friend was feeling a bit sad about her son's 4th birthday (also a child with asd) and she received a lot of comments encouraging her to stop feeling blue, birthdays are exciting no matter what blah blah blah.  Well I have to tell you this - we mothers who have children with special needs really need to grieve (it's our process for healing) and it might make you feel better to make confident, enlightening comments BUT please, if you don't have a child with special needs you actually don't know how we feel! The best thing you can do is to actually acknowledge that we are perhaps having a bad day and need a bit of sympathy or even a hug! (Obviously this is a generalization - not all mothers feel like me!)


Why is Nick's birthday not a good day for me???


Because 12 year olds should be able to talk........ and......
  • 12 year olds should be able to cheek their mother
  • 12 year olds should be able to wipe their own bum
  • 12 year olds should be reading, writing, doing math, science, history, art etc etc etc
  • 12 year olds should be playing sport, being team members, learning about winning and losing
  • 12 year olds should have lots of friends.......... and lots of friends!!
  • 12 year olds should be fighting with their brother
  • 12 year olds are sophisticated, complicated, funny, irritating, mischievous and naughty
  • 12 year olds only have another six or so years of being at home with their mum!
  • 12 year olds grow up to being independent adults!
Get my drift??

Nick's first introduction to an electric toothbrush
May 2011

Nick can put on his own shoes but wouldn't have a clue what to do when those shoes give him problems
May 2011


ON THE BRIGHT SIDE
Nick is the most endearing child and we adore him!
End of April 2011


~*~
ROLL ON THURSDAY MAY 26!
~*~