Friday, November 25, 2011

Sharing is caring!



Being a special needs mum can be a lonely business at times! I recall when Nick was a wee tot and I didn't know ANYONE who had a child with special needs. Also *back then*, our internet options were limited, support groups seemed to be few and far between. It was a very isolating experience, made even tougher due to the utter misery of trying to come to terms with my child's disability. How my marriage survived I don't know! I vividly remember having a glass of wine in my hand and throwing it very hard towards my husband and it smashing on the wall behind him (of course I wasn't really aiming for him!!!). It is easy to laugh now! :)


Today, connecting with other parents is a totally different experience. Keeping in close contact with family members all over the world has changed my life.  Gone are the days when I used to write to my Mum and then wait a month before I got a letter in return! Want the long distance cousins to grow up together?  Connect them through facebook and YouTube (with careful supervision of course!). 


For those of us who want to create awareness of our children with special needs, the internet makes it incredibly easy. Whenever I write a new post, I have in mind the *young mothers*. The mothers who haven't been on this journey for very long. I want them to be aware that life gets better! YES, there is still the odd blue day, however, post a simple sentence on facebook and have your day brightened by the support that is shown. OK, the comments may go a bit off topic and turn into compliments *blush* BUT it is incredibly uplifting to get that support. Oh, how I wish I had this ten years ago!

Mind you, I have been wondering if perhaps, it is all a bit narcissistic sharing my story and posting comments on the internet! "Narcissistic personality disorder is a mental disorder in which people have an inflated sense of their own importance and a deep need for admiration". OK, I am fairly sure that I don't have an inflated sense of my own importance! As for the need for admiration, well sure, it is nice to have people make nice comments! On behalf of all parents of children and adults with special needs, I need to say that there are times we need to call out for positive reinforcement and it helps tremendously to know that we have friends out there who understand what we are going through. Does this make me narcissistic, I hope not!


My facebook post today.......
The joys of having a special needs child??? I can't think of any right now! If you have any positive uplifting *joys* please feel free to post here!! :)




Tobys expressions of joy, love, and enthusiasm, are 100% untainted by any other feeling.


I've learnt to be patient? ... well more patient than I would have been :) and maybe not to have expectations - that way I can be thrilled with any / all accomplishments...


it can be a double edged sword but these kids are genuine when expressing their thoughts and emotions....we just have to get it all out of them, and they have a very funny sense of humour, hope you start to feel uplifted sooner rather than later


The friends you make.....?


And the people who love them!!


The happy times are so much sweeter.


I get to hear, mum I love you so much.....50 times a day :)


The innocence. . . .


 I know the lines from Finding Nemo off by heart, and when I say a line to Shaurav I always get the bestest smile... even in the middle of a tantrum!


 ‎... they say it (what ever it may be) builds character - OMW & what a character u are! Hang in there Di ♥


Know how you feel - is all I can offer Di...onward we go...oh and then we do have the little breakthroughs...the future is open ended...strength.


 Leaky duck session?


 Those rare moments where you see a miracle of development happen


 BIG hugs - am also having one of those days - bedtime needs to come quickly! Tomorrow is a new day!!!!


Di, I think I'm feeling as bleak as you! Eish!! Not sure if it's this house or the weather!


You've been able to teach us all so much! X


 Smile, watch a comedy...it's this dreary weather. x


Di, your are an inspiration to so many. Put today behind you and start a fresh tomorrow, if anyone can get through a tough day its you!


Hang on there. I'm thinking of you. Been there, done that and I know the times will come when the circle will come around again. It does. It's natural. Even we - the parents of kids of special needs are only HUMAN!


keep your chin up Di xxx your an awesome person never forget that xx


Children with autism don't pretend or lie, so you always know you're getting the real deal...that's something special and very hard to find in neurotypical people.


Meet other autism mums


 learn loads of truths about the world that 'ordinary' people just don't know


 Don't worry Di, u are a awesome mum and person. Just pray to GOD he will guide us and show us the way...when times are hard....


A special needs person teaches you to be humble


Those times when your kid does something you really thought he might never be able to do. Like just hanging out at a restaurant. Or joyously shopping with you. Or doing school work. We never take those things for granted. Hugs. 


All of the above............. and let's face life is and will never be boring :) (hugs)


Hope u feeling better xxx


 The joy and blessing of the opportunity to be a better, more patient, more self-less, more educated, more involved, more engaged and more connected parent, with all of my children!



Perspective....I would be a very different type of person if my perspectives were not widened by my own children, and our community! Truly *special needs* has taught me ( and us) so much for ALL of our relationships. Isnt it wonderful that now, we can look at a mom and her child, anywhere, and know that there can be so many things happening behind the scenes...This makes us truly understand relationships far more then if we never had this opportunity


Life is unpredicatable, it's little pockets of happiness and moments of beauty that keep you going xox


We all have those days, and apparently parents of typical children sometimes wonder about the joy of having just regular kids too... So this kind of thought occurs to many parents. Remember the joy of feet on sand? I wonder if you would be getting as many comments and support if you didn't have a special needs child?


 http://blog.autismspeaks.org/2011/11/24/be-aware-for-parents


They teach you more about you than you could ever teach them about anything. Look how much you have learnt....all those pathways of yours that would have otherwise been blocked...You are now very wise and an inspiration to everyone especially those that are only starting the journey.





Thank you so much, I appreciate every comment, 
you have lifted me up when I was down!
Tomorrow is another day!
xx

P.S. My dear friend who is going to be moving to greener pastures, I am going to miss you BIG time ~ we have been through so much together! Ah well, at least we can keep in touch via the internet!! AND, I am coming to visit! Lots of love xx

Friday, November 18, 2011

Me and my boy!

A friend has asked me to write about Relationship Development Intervention and what it means to me! Now, I am all for autism awareness and I don't have a problem with 'sharing'. I can talk about RDI until the cows come home, however, please bear in mind that everything I write, is about my experience!


First of all, I think that I need to go back a wee step....


I am an old autism mum, as in, I have been 'doing autism' for over twelve years. I have been through every stage possible to get to where I am today. OK, I still have the puberty issue to go through.... but let's not go there just yet!!!!


I know what it is like to be at the beginning of this very long journey.... 


I have been there! I have done the rounds of Doctors and specialists on that ever elusive quest to figure out my child. I tried hard to get my child onto that education roundabout.  I thought that if Nick could cope with schooling the mainstream way, then he would be ok. I was obsessed with helping my child. I wanted to fix my child. I was obsessed with helping other people, groups, kids in order to avoid being obsessed about helping my own child.


I tried hard to find things to involve myself in, something/anything that would take my mind OFF my situation.


But, at the end of the day, reality sinks in and it has to be dealt with.  No more running away!


I had to take a good look at my situation and my child..... To go through this process is painful. It is gut wrenching and raw. My husband once said to me, that he would never get over the grief of having a child with special needs! He was wrong. Slowly and surely he has moved on. My husband shows his acceptance by the love and affection that he pours over our child. 


OK, now we have acceptance. We have come to terms with Nick's disability. We realise that we are in this child rearing business for the long haul. When our friends start bemoaning their empty nest syndrome, we will be thinking "oh s**t, there go our plans of spending our retirement travelling the world! 


Now that we have reality, let's look at Nick! Where is he 'at' from a developmental, educational, emotional and social perspective. What can we do to improve his quality of life and our quality of life!


Education.... hmmm, well this is a big problem, but you know what, I don't care, this is a little blip in the grand scheme of things. We will continue plodding along slowly with this one and what will be, will be!


Developmentally, he is way behind his peers and it is a given that he always will be! Such is life! Emotionally and socially ~ well, that fit's right in there with development!


We had to ask ourselves. Do we just cruise through life and hope for the best! Do we, as Nick's parents train him to respond to people and situations in an appropriate manner! Do we keep everything in his life predictable in order to prevent stress of any sort! Do we lower our expectations because he is a child with special needs! Do we keep him at home and NOT expose him to the outside world! Do we bother to create a real emotional interactive relationship with our kid or do we just care for him..... and hope for the best!!!


What about us, the parents! Do we want to devote every moment of our time and energy to our child! Do we want to cut ourselves off from society and become a closed little family unit! Do we want autism to be our life to the exclusion of everything else! NO, of course not!


Life has to be about having a healthy balance!  This is where RDI has helped me...... This particular therapy (although it doesn't feel like a therapy ~ it is more of a lifestyle change!) has been a very huge AHA moment for me!


RDI has scooped me up, off that fast boat to nowhere! It has slowed me down, calmed me, taught me that progress is possible, that having a relationship with my child far outweighs anything else.


I am certainly not an RDI poster girl. My life is not 100% focused on remediating Nick! However, I am cool with that, after all, my life is all about having a balance.


RDI looks at the developmental milestones that my child has missed out on and then RDI guides me on how to parent Nick to achieve those milestones (after 12 years of autism, this doesn't come instinctively to me any more!). Crumbs, I know that I am not doing justice to RDI here and I am only just touching the tip of the iceberg, however, the day is moving on and I am done with the whole autism subject for now......


Maybe I will write a Part Two!!


In the meantime, there is coffee to be had, grocery shopping to be done...... oh, and planning for our next overseas trip (we have decided not to wait until retirement!!).


~*~ 

The other day our little family unit went out for coffee to a lovely place called Sage (it's in Ballito!). We went on impulse. Nick has never been there before. We went empty handed, no books, no music, no iPad! 
The outing was not about Nick!
It was about family, flexibility and calmness!
It worked!
Look how far we have all come!

~*~



Sunday, November 13, 2011

Cutting Edge..... yeah right!!!!!

Not so long ago I saw an advertisement for a course on autism, not just a plain old course BUT one that was 'Cutting Edge'. I debated about attending!  Let's face it, my child is 12 years old and I have been to a few conferences.... BUT this one was 'Cutting Edge'!! 

If I did go, it would mean leaving my family for two nights. It would mean taking a plane. I would have to hire a car and drive around Johannesburg (which in itself can be a bit scary!). I would be all by myself. Hang on a minute, I could meet my friend Sarn for lunch.... at SANDTON!! I could stay with my lovely friend Brenda! I could also meet up with two Durban friends at the course.  The more I thought about it, the more I thought how can I miss the opportunity to attend a course on autism, especially when I could also have some fun and perhaps do a little bit of shopping!

Therefore, I duly left my family to sort themselves out! Did they manage? I don't know ~ I didn't bother asking!! :)

Anyway, back to the course.....

Our day was jampacked full of speakers, covering a variety of topics. I am not going to give you a blow by blow account of it all, otherwise this will turn into an extremely long post! Excluding breaks, we sat for just over seven hours *listening*, shuffling in chairs, sneaking out for a quick loo break, whispering to the neighbours, sucking on mints, rummaging through the handouts, checking out who was wearing what!

To be honest, I have to say that the course was NOT cutting edge and although the speakers seem like really nice people, their lectures were just a bit out of date!  I can't really expand on that, otherwise I am sure to be shot down in flames!!!! 

However, I do have one thing to comment on! How could I not!

I was quite excited when the following was mentioned by one of the speakers (in fact, I pinched it from the handout!). 

“Children with ASD found to experience particular difficulty with: gaze shifts, shared positive affect, joint attention, using a range of communication means and functions, use of gestures/non-verbals, reciprocity, social affective signaling and imitation.”

How fantastic, we were going to hear about new 'Cutting Edge' ideas on how to help children with everything mentioned in that one paragraph! I sat eagerly on the edge of my chair......

and waited
and waited

Not once in those seven hours was anything mentioned that related to that one paragraph (or what I perceived that paragraph to mean!). Sure, child development was discussed, BUT each and every therapy spoken about, looked at the child from an academic point of view and what needed to be done to make the child successful at school. 

People, I think the point is being missed here! We need to go back further and further to the beginning stages of child development. Don't we want our kids to be dynamic thinkers? Don't we want to give them the opportunities to communicate in an experience sharing way? Don't we want to have a *real* connection with our children? I know I do.............. and if that means accepting that my child has missed out on all of those important steps when he was a wee tot, well then, so be it..... I am going to go right back and address those developmental milestones that he didn't pass!  After all I have nothing to lose and everything to gain!

As for the autism course, I don't think I will be attending another one in a hurry, unless of course I need to find an excuse to visit lovely friends and go shopping!!

Oh, by the way.... the only thing I bought was a small parachute for Kids First!! :)



~*~


Thursday, November 10, 2011

Connections!

"UhUh"
his favourite word
it's me he means
Mama!

He looks to me
smiles with a twinkle in his eye
"biscuit" he says
signing with his hands

"more" he says
signing with his hands
he waits for my reaction
"no no" I say
he waits a bit longer
he asks again
so typical kid ~ I love it

walking together
I stop and pause
my child stops with me
we start
we stop
we start again
the boy in sync with me

in sync
connected
communicative

he stops me
gestures
it's a car
then a bird
the cat by the pool
when did this happen
this sudden progression
to pointing and showing

I love this child
this sweet uncomplicated boy
this child of mine!

(Doing our best to get a passport photo!!!)

(five minutes ago!)

~*~