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!!  

1 comment:

  1. I loved reading your story! I am with you on the slow progress. Three steps forward and two steps back and you can't wonder where they will be in ten years. It's too overwhelming!


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