Sunday, October 30, 2011

Blogging is cheap therapy

To be the parent of a child/teenager/adult with special needs is many things;


Challenging
Uplifting
A journey of pain and heartache
A learning curve 
A sad farewell to friends who can't/won't walk the path
A delight to meet new friends
Stressful
Motivating
Acceptance


There are many words to describe the journey that I am on.........


There are also words out there that can cut deep into the heart of many people. There are attitudes out there that can be really soul destroying.  


My child is 12 years old. It has taken me many years to come to terms with his disability; and I like to think that I have turned the corner! I have reached acceptance, although, I do accept that there are going to be times that the blues are going to hit me with a big WHAM!


I am a big girl, I have got my big girl panties on!!!!! 


But that doesn't mean to say that words don't hurt me. Words said without any thought behind them, words said unkindly, words alluding to my son with special needs, words said in a bitchy moment. I am so aware that the teenagers of today say demeaning words, without actually realising the damage that they can cause. I am also aware that adults use the same words. Most of the time I can take it all with a pinch of salt! :)  


After all, I am a big girl, I have got my big girl panties on!!!!! (If I say it often enough, I will come to believe it!)


But, when words and attitudes upset the siblings of children with special needs.... I am outraged. To look at my son's crestfallen face, to see the hurt in his eyes. To hear stories of teenagers bullying the siblings of children with special needs, the meanness of those kids, the hurt that cuts to the very bone of those being picked on! When our kids hurt, we hurt............... and in turn, when we are hurt, our kids feel it!


To end this post, I have a very short story..........
We are a family of four, we don't have ANY relatives in the country of our choice. Over the years we have been invited by various friends to spend Christmas Day with them. We truly have had some lovely times and I will never forget the friend who was very chilled and understanding when Nick (he was just a wee boy), silently and carefully, picked up each item of a very special nativity scene, and one by one proceeded to 'post' them out of the window.... where all but one broke into pieces!!

Another invite from a friend went something like this...... "Come and spend Christmas Day with us.  You can bring Nick BUT I am not having anything to do with him, you must be in charge of him!"  Needless to say, we didn't go and that person is no longer a friend! END OF STORY!

Jazzy, you are so right, blogging is cheap therapy!  Thank you x




Tuesday, October 25, 2011

autism, autism, autism!

What is it with this autism thing? 

I feel like a woman possessed..

 Autism is here 


Autism is over there.


Autism is all around around me




Sometimes, I feel like my life revolves around autism
It's not just my child
It's my friend's child
It's her friend's child
It was the motivation for my school
Autism is the reason for our Mums support group
Autism calls me
It called me to the last Action in Autism meeting
It's calling me to Ballito on Friday to be part of a group of parents and teachers looking to start a school
It has called me to be a participant in a workshop being held in Kids First this Saturday
Autism is calling me
again
to a workshop in Joburg (sorry, Midrand!!) next weekend

HOLD ON A MINUTE
did I say next weekend?
a one day workshop?
BUT
hey
I am away for two nights and many many hours that DON'T involve autism

It is one day of autism

THE REST IS MINE!
and 
I CAN'T WAIT!

seriously folks, autism is a large part of my life
however, this blog helps me to off load
which prevents me from boring my friends (the non autism ones!!)
THUS
enabling me to have some autism free time
in my life!

I don't really give a toss about the workshop in Joburg (sorry, Midrand)
it's just a bloody good excuse to go away
to be me!

perhaps
I am not so
possessed 
after all!!

~ * ~




Friday, October 21, 2011

Progress is a lovely feeling....


Hi all


My son Nick is 12 years old. He is unable to talk, write his name, add 2 + 2, ride a bike or climb a jungle gym. However, he can communicate, he can laugh with great gusto, he is beginning to point out things of interest in his environment, he is interactive, he loves being with us and he is calm!


Over the last year and through RDI I have been playing a larger role in Nick's life. We have been working on building our relationship.Today was an AHA moment for me! Today I realised how far we have come! Today I learned that Nick now trusts me!


To go back a step.... a few days ago I took Nick to the beach and with some encouragement I got him to walk on the sand with me (huge sensory issues, therefore he was wearing his shoes!).


Today, we went to the same beach, however, this time we left our shoes in the car! I pointed out to Nick the sand, the sea and the silly birds by the water edge! Together, holding hands, we walked onto the sand and slowly but surely towards the water. Now and then Nick would look to me, tighten his grip on my hand or make a noise! He became slightly agitated as we approached the wet sand, so we stopped, paused, took a couple more steps and then turned around and walked back up the beach to the promenade.


This is huge for the both of us! I don't recall the last time we went on the sand together, although I do know that he was under the age of four!!


Onwards and upwards....



~ * ~

Monday, October 17, 2011

Oh. My. Nerves!

Subject: Browns' School prize giving

Hello Di

Thank you for agreeing to be our special guest speaker at our Autistic Unit prize-giving on
28 November 2011 at 08h30.

Please let me have a brief CV and an idea of your ‘topic’ on the day.

Sincerely
HOD Autistic Unit

~ * ~


Well, here is my brief CV............

Di Maitland is originally from New Zealand.  She met her husband Allan in London and when Allan was due to return to South Africa, she was easily persuaded to make the move with him!  Before starting their family, Di worked as a Grade One Teacher at Altholton Primary School in Durban.


Thomas came along in 1996 and life was easy, however, a few years later Nick was born and they entered the world of special needs.  Due to a lack of school opportunities for their son Nick, Allan and Di founded Kids First and opened their doors in January 2006. 

Di is an active member of the autism community. She gave a presentation ‘Relationship Development Intervention, A Mother’s Experience’ at the February 2010 Autism South Africa, Durban workshop.  An edited version of the presentation was published in Pep Talk, a magazine produced by the Association of Children with Disability, based in Tasmania. The same article was also published in the Autism South Africa Aut Talk.

Di was a member of the Living Experience Panel at the November 2010 Conference, Autism & Development Disabilities: The South African Context. She spoke about her experience of having a child with special needs.

Out of interest, Di is a keen South African rugby supporter EXCEPT when they are playing against New Zealand!

~ * ~

My topic is 'Creating Connections'............... and that folks, is as far as I have got!!





~ * ~

Saturday, October 8, 2011

Fun and GAMES!



Nick has been on school holiday for a week!


Groan! 


Actually, I exaggerate, it wasn't that bad! 


My boy is certainly a lot easier these days! He is comfortable with going to new places and being around people he doesn't know! Gone are the days when he could only cope with one outing a day!  Now we can zip in and out of the supermarket, coffee shop, a friend's house and also go for a walk along the beach front! I am so relieved that he is more adaptable to changes in his environment and routine!




Look, if I am completely honest, it can be a bit frustrating having him around 24/7! Unfortunately he is not capable of entertaining himself ~ unless he is playing with the computer, iPad or watching TV.  Put him in a room with games/toys/whatever and he will sit there with a blank expression on his face and pick his nails or flip through a book! 


The time between my wake up and Nick's bed time amounts to around 13 hours ~ that is a lot of hours to fill in! Especially when you have a kid who doesn't know how to play!!!


We are still doing the Therapeutic Listening Program and I make the most of that 1/2 an hour, twice a day habit! Now don't get me wrong, I am not chained to the post (this is South Africa after all). It is possible to make a plan if I need to have some time out!


In fact, having a school holiday is a great opportunity to slow down, take it easy and spend some quality time with Nick. Besides doing the inevitable grocery shop and having the daily cappuccino fix, I actually do make a bit of an effort and plays some games with my boy...... admittedly not often enough, but I am getting there!!!!


I have discovered that it can be quite fun ~ I can also bring in the latest RDI objective that we are working on, which in turn makes the interaction productive! :)




I am not going to provide an analysis of the above clips ~ I have included them in this post for FUN!

Two more sleeps and it's back to school!!

Nick can't wait! 

~ *  ~