When you realise that 2017 is the year that your special needs child is turning 18?
When it hits home that this should be his last year of schooling?
When it dawns on you that this is the year he qualifies for a driver's licence?
When your heart pangs over the fact that he will not be spreading his wings ~ leaving home ~ getting a girlfriend ~ going to University ~ becoming independent?
What would you do?
How am I feeling?
Sad that my son is missing out on so much.
Sad that my son has no idea on what he is missing out on.
Sad for myself because each huge milestone missed is painful.
Sad for my other child because ultimately he will have to take on the responsibility of his brother.
Sad because one day I won't be here to look after him.
Sad that I am going to be a carer for the rest of my life. #donotjudge
Sad that I am not going to have empty nest syndrome.
Sad that my neurotypical friends are able to do what I can't do.
How would you feel?
What am I doing?
Having a wee cry every now and then.
Staying off social media.
Hanging out with other special needs parents, as they are the only ones who really understand.
Accepting that it is okay to have these sad feelings.
Understanding that grief has to be addressed and not buried away.
Exercising to keep the body strong.
Taking up Yoga to help find peace in the moment.
Drinking the occasional glass of wine.
Thinking up travel treats to get myself through this huge milestone.
Playing with my camera because I love it and it's a good switch off from reality!
Yes, you did read it right.... *comparison* fatigue!
I have had an absolutely splendid and a jolly good show of a time with my family in the UK (said with a very fake English accent!).
We have been everywhere, man (gotta throw in a kiwi expression, although it is a very old one!).
Eish (South African word), it's been cold, wet and sometimes wild. Feels very weird to experience a UK summer that is actually colder than our Durban winter!
Really and truly, the time out has been fantastic. I needed some space and I also craved having some time with my first born. It has been great to reconnect with Thomas, without having to take into account the needs of my Nick.
Generally, I live in a bit of a bubble world. My life revolves around my family (of which there are four of us and a dog), school, friends and all that other stuff that happens on a daily basis. I come into contact with children, although I don't spend a lot of time interacting with and/or observing them.
Thus, when I leave my little bubble world and spend some real time on the outside, I get a serious wake up call....
It is kind of like, "Oh shite, so this is what typically developing kids do!"
I am thinking.. theme park, large noisy rollercoasters, kids running all over the place, yelling, screaming, negotiating, arguing, laughing and having a wonderful time.
I am remembering the most precious 9 month old boy, who had made the long trip from New Zealand, adapted to his surroundings with ease and then thrust into my arms (a complete stranger to him). There was an immediate bond within split seconds That instant interaction with him was incredible. Oh help, he is more socially advanced than my own child, who just happens to be 13!
A picnic with kids, lots of noisy boisterous boys. A tug of war, pulling hard, moving together against their opponents, team work and laugher. Not possible for my Nick.
Playful cousins, jumping, tickling, rough housing and all that glorious stuff that kids do to each other.
I watched a young man showing his delight at the musicians playing their music on a busy market street. He rubbed his hands together, over and over. I listened to the repetitive sounds that he made. Was he autistic? Who knows... and it doesn't matter. . After a while it gets a bit much. The observations start to hurt a little. The comparison is vast, a massive chasm between regular kids and the capabilities of my son.
Real time can be exhausting....
My bubble world is reality, although the opportunity for comparison is less. Right at this moment, I am keen for less!
We have just arrived back home after a weekend away. Due to a coffee stop on route, I found myself driving the remainder of the journey ALONE! This is practically unheard of... me alone? I turned on the radio and drove. For the life of me I don't know how I got home! My mind started wandering and I started thinking about my situation and then the REALITY of my situation. My mind went through a whole range of emotions. Sadness, despair, anger, extreme anger, acceptance, a bit more anger, a few swear words! Of course I realise why I feel this way and I also know that it will pass!
I came to the conclusion that in order to work my way through my emotions is to write about 'My Reality' So here I am.... blogging about some of the crap that I go through! I am not sure how many 'My Reality' posts I will write and my language may deteriorate somewhat, but..... here goes....
Holidays
At the beginning of each long holiday I tell myself, "I can get through this". I remind myself of how far I have come. I have moved on from those early days of feeling very low, despondent and downright depressed at having my child with me 24/7.... to embracing the fact that school holidays are a perfect opportunity to slow down, chill and just go with the flow! Holidays have become much easier with time.
Hah!
I have just got through two whole weeks of rolling whatever way the wind blows. I am talking autism, stimming, the constant tapping on my shoulder, code undies, the repetitive mind blowing dull day-to-day routine of feeding, bathing, going out for coffee, grocery shopping... and any other activity I can think of that helps to keep us occupied! I try to keep off facebook so that I am not constantly reminded of all the lovely things that *normal* families are doing with their days. That's right, I am not part of a normal family.... I am part of a very dysfunctional family unit! Oh sure, a lot of people will say that each family is dysfunctional in their own way, however, throw a special needs child into the mix and then you will REALLY know what I mean by dysfunctional!
Can you feel it people? Can you feel my anger coming through? Shit, I so want to be normal and I want my child to be autism free. I want to have a regular life without all this extra stuff....
It's okay, this is just me after spending two solid weeks with my child without much of a break. The tension starts building and my shoulders become stiff. I know that I am very irritable and that it wouldn't take much for me to lose the plot! I can hear my inner goddess bitch saying "don't give me any grief, because my comeback won't be pleasant!" This irritability is only a short term thing. As soon as I have a break and/or my life goes back to normal (Nick at school five mornings a week ~ me free for 5 mornings a week!) then I become my old self again!
I need my space. I need my time alone. I need time out from 'My Reality'.
Thankfully, I have a big treat in order to keep me on track. A reward to keep my temper in check. A reminder that I am soon going to have some time out.
As I was nearing home, the following song came on the radio. I pumped up the volume and cast adrift my negative thoughts.....
The only words I remember are.... "what doesn't kill you makes you stronger". Those words made me feel a little brighter! :)
