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!
~*~
Restoring balance is the only way. Excellent blog
ReplyDeleteLove this... So much close to my thinking...
ReplyDeleteThank you Declan and Petra! :)
ReplyDeleteLook forward to Part 2 Di x
ReplyDeleteHaha, I set myself up for that one Angela! :)
ReplyDeleteNeed to get the Browns School *thing* over and done with first!!
This is very timely for me. I too am an old autism mom and I think my balance is a little off. I desperately need a hobby.
ReplyDeleteHi A.E. Good luck finding your hobby ~ and get better soon! :)
ReplyDeleteWell done you...and your family! You have indeed come along way and it is good that you share your hard earned knowledge with others. It does help.
ReplyDeleteGreat post!
xx Jazzy
Thanks Jazzy x
ReplyDeleteI hear you on the long haul, Di. When chatting about David being in college with someone, they started commiserating about the empty nest. Excuse me? I'm not sure the nest will ever be empty, and it is what it is. Fortunately, our kids can continue to develop and grow at their own pace. Even if they never leave the nest, life can get better.
ReplyDeleteTammy, you and me? We are on the same page! :)
ReplyDelete